Sunday, 26 June 2016

A Child's Heart

A Child's Heart:

A pregnancy and a birth is a magical experience for any mother.

When Caitlin and Rachel introduced their beautiful baby boy Beau to the world, everything was perfect...
Except unbeknown to them was a little secret "Beau's Heart"

When little Beau was just a few weeks old he began having difficulties with his breathing which was later diagnosed as Bicuspid Aortic Value.

One of Beau's mother's (Caitlin) kindly agreed to an interview with me so as to help raise awareness of Beau's condition.


The Interview:

What is your name and age?
My name is Caitlin and I'm 52.

What is your wife's name and age?
My wife's name is Rachel and she is 28.

What is your son's name and age?
Rachel gave birth to our son Beau who is now 15 weeks old.

Did Rachel have a normal pregnancy or were there any complications?
It was a normal pregnancy, no complications.

Did Rachel have a normal labour or were there any complications?
Labour was natural delivery at 40 weeks and 2 days, Rachel had just gas and air plus some help from the kiwi device.

What did Beau weigh at birth?
Beau weighed 7pounds 4oz at birth.

Please explain in full detail the issues which made you aware of Beau's problems with his heart:
Beau was absolutely fine until he was 5 weeks 3 days old. Rachel went to put him in the high chair to go out and noticed his lips and tongue were blue his eyes were glazed he was very hot and clammy his breathing was very fast he was really responding so we called ambulance.

Beau was taken to Derby Hospital by ambulance, how was his condition treated?
Derby A&E thought he had some kind of chest infection he came back round with oxygen.
He was moved to dolphin ward and they came to scan his heart and found he had coarctation of the aorta and fluid around his heart.

Due to a second episode of Beau struggling to breath he was transfered to PICU at Glenfield Hospital, how was his condition treated there?
From Derby he was blue lighted by ambulance with a doctor and a nurse to Glenfield where they took him straight in to have the fluid drained from around his heart.
He was in intensive care and had the arch widened 2 days later.
4 days later he moved to ward 30 the paediatric heart ward.
He was discharged 2 days later.

What was Beau diagnosed with?
He was diagnosed with bicuspid aortic valve.
Moderate to severe aortic valvular stenosis.
Coarctation of and hypoplastic aortic arch impaired ventricular function. Previous pericardial effusion.

Is the condition hereditary?
No its not hereditary although there are a lot of heart problems in the family.
He had pericardial effusion on 20th april and coarctation repair with end to end anastomosis, pda ligation via left thoracotomy on 22nd April.

How was the diagnosis made?
He was diagnosed by echocardiogram

What surgery has Beau undergone?
Will Beau need more surgery?
He currently has narrowing of aorta so requires a balloon angioplasty  soon this is provisionally booked for 12th july
Beau is on medication for his condition, we have to monitor his breathing closely, he is currently unwell with a tummy bug which we have to get him checked at doctors or hospital in case it puts any added pressure on his heart.
He also needs increased calories so is prescribed sma high energy as he burns the calories quicker than a healthy baby of his age.

What is Beau's prognosis for the future?
Prognosis is good but he will need regular reviews and follow ups by Glenfield regular echo scans he may need further intervention as he gets bigger.

What support was available to you and your family?
We have had a lot of support from Glenfield ward 30 and the cardiac liason nurses in outpatients.
Also his GP Dr Pollock has been brilliant and health visitor Emma.

What advice would you give other parents/guardians in a similar situation?
I would give the advice of although it's a horrendous thing to see your child unwell the wonders of modern science and technologies means they can do so much now to help tiny babies.
Babies are so much more resilient than u think.
You are not alone.


Help & Support:


Beau's GoFundMe Page:

Sunday, 19 June 2016

Babysitter From Hell

Sian Regal and Sean Walther were new first-time parents to their handsome son Coby Walther.

Like all new parents they were tired and stressed but very happy too.
They arranged for Sean's sister Jessica Miles along with her partner Adam Boardman to babysit.

They didn't just randomly select a person they didn't know, they left their child with someone they loved and trusted.

However, Jessica's partner Adam unpremeditated an assault on Coby's tiny and defenceless body, causing actual bodily harm and leaving Coby near to death.

Here, Coby's mother Sian has kindly agreed to an interview with me in relation to the assault on her baby boy Coby.


What is your name and age?
Sian Regal 27

What is your partner's name and age? Sean Walther 26

What is your son's name and age?
Coby Walther 6

On a rare night off from parenting duties so as to spend time as a couple, who was responsible for taking care of Coby? Coby's aunty, Jessica Miles and her partner Adam Boardman

When you next saw Coby what was your initial reaction?
I didn't think.
I just grabbed Coby put him in the car and told Sean to keep talking to him and to try keep him awake, while I drove to the hospital.
It was all a blur

What injuries did Coby sustain?
Coby sustained severe bruising to the face and head, subdural brain haemorrhaging, a perforated ear drum, retinal damage, a fractured humerus and multiple rib fractures on both side

How were Coby's injuries dealt with and treated in hospital?
Coby received a cranioptomy which requires half of his skull being removed to accommodate the swelling of his brain.
He was placed into an induced coma and his body cooled

How long was Coby hospitalised for?
He was in intensive care for 3 weeks and in the ward for 2 months

When was Adam Boardman arrested and charged with the assault on Coby?
May 19 2010

What was Adam Boardman's sentencing in court?
He was sentenced all up 10 years with 6 and a half years in prison and 3 and a half years parole

As a result of Coby's injuries what is his prognosis for the future?
It is still to hard to tell but as it stands now he has no use of his left hand, he can use it to stabilise things but he does have difficulty.
He receives botox every 6 months to help with the tightness in his left arm and leg. He is also doing occupational therapy to help him overcome his obstacles that he encounters.
He will always have the left-sided weakness and physical impairment causing permanent difficulties with physical function as he grows.

Why does Coby need to attend a "special school" and not a "regular school"?
Coby has been diagnosed as moderate intellectual disability and also with his physical disabilities he needs more attention, which he gets at his special needs school

You mentioned how you'd like to do fundraising, what is that for?
I had hoped to raise funds to buy and to train a dog to be a companion dog for Coby to help with his meltdowns.
I was able to buy a dog "woofy" for Coby with money already fundraised for Coby through his gofundme page.
I was also hoping to fundraise just for the special things Coby requires that is not covered by funding as in;
*All the extra pairs of shoes he needs as he wears a pair down in a matter of weeks due to the dragging of his left leg. *The petrol that's needed to be going back and fourth to and from the hospital for appointments,
*The private swimming lessons,
*A specially modified bike for Coby to ride,
*To make a sensory friendly room for
Coby to help with his meltdowns.

"Coby requires just all them little things and its difficult to be able to provide all these things with my own finances alone"

How is the relationship between your partner and his sister since?
There is no relationship anymore

If you could write a message to Adam Boardman what would you say?
I would ask him why??!!!

"How could you do this to a defenceless little baby let alone someone else's child. You have left Coby to deal with the repercussions of what you done to him for the rest of his life.
This has not only put a great deal of pressure on him but me and Sean and also Coby's family having to see him struggle to do things that he should be able to do, to see him get so frustrated and have meltdowns because he wants to do something.
No matter how hard we try sometimes we just can't understand  how you get to "get out of jail" and get on with your life while
Coby will struggle for the rest of his life"

What advice would you give other parents/guardians in similar situations? Take it day by day, week by week.
Be strong for your children because they need you, they can teach you so much and show you just how strong you are. Children are incredible and even when faced with these hard challenges still seem to be able to smile.


Help & Support:


Coby's GoFundMe Page:

Please make a donation.
Big or small, every little helps to bring a smile to a little boy's face


Adam Boardman - publication:


Multicentric Infantile Myofibromatosis

Multicentric Infantile Myofibromatosis:

What is your name and age?
My name is Laura Flake and I'm 24

What is your son's name and age?
My son's name is Jacob Light and he's 2 in September

Did you have a normal pregnancy or were there complications?
I had a normal pregnancy with no complications

Did you have a normal labour or were there complications?
I had a normal labour apart from when he was born

When did you first notice that Jacob was crying but there was no sound?
I first noticed Jacob was crying when he was seconds born but couldn't tell as he had no sound

Why did Jacob need help with his breathing?
Because he had a tumour in his neck which was restricting him from swallowing and breathing and high risk of choking.

After being transferred to another hospital, a lump was found on Jacob's neck.
Scans revealed more on his ground and ribs.
What was Jacob diagnosed with?
Jacob was diagnosed with a very rare condition called Multicentric Infantile Myofibromatosis

What was the cause of this condition?
We still didn't get down to the bottom of what actually caused this condition.

Is it hereditary?
No it's not hereditary

How did the doctors treat this condition?
They started Jacob on a small weekly dose of chemotherapy and then a higher dose of chemotherapy every 2 weeks for a year.

Was there any side effects?
Jacob had a lot of side effects to the chemotherapy he had a low immune system which caused chest infections, he also was tired all the time and the chemotherapy made Jacob vomit a lot.

When and what was Jacob's first word?
Jacobs first word was 'mumma' it was in hospital when he was about 10 months old.

How has Jacob's development been since?
Jacob has come such a long way since he had the tumours, Jacob is behind in his development for his age but he is getting there with the help of physiotherapy and portage.

What is Jacob's prognosis for the future?
At the moment it's just to keep an eye on him and have regular scans and to make sure the time mourns do not re grow.

What advice would you give other parents/guardians in similar situations?
My advice would be to talk to people don't just take one person's word on it.
Look into the condition a little more, then you'll have a better picture.
When Jacob was diagnosed with this rare condition I didn't have a clue what it was or why he had it.
I had no one to talk to about it so the reason for me to raise awareness for this condition is so if anyone was to have a similar condition like Jacobs I'm there to help and support them and there families.


Help & Support:

Monday, 13 June 2016

Isabella "Amazing" Grace Proctor

Isabella Grace Proctor is an "Amazing" gift from God.

Despite being alone and frightened upon hearing the news that her beautiful baby would be born with Downs Syndrome (trisomy 21), she fought against all odds and her "Amazing" baby girl arrived on July 2nd 2014.

Despite Isabella's health conditions she is just like any other little girl her age.


Isabella's Facebook Page:

An Interview With Cristy Proctor:

What is your name and age?
Cristy Proctor

What is your daughter's name and age?
Isabella Grace Proctor
Almost 2, born July 2, 2014

Did you have a normal pregnancy or were there any complications?
High risk pregnancy due to being over 35. I also had extremely low levels of magnesium and potassium and required weekly infusions and was admitted every weekend for the last 2 months of my pregnancy.

When did you become aware that your unborn baby would be diagnosed with Down's Syndrome?
22 weeks of pregnancy

What was your initial reaction upon hearing this news?
I was very shocked, mainly due to the way I received the news. 
I had went in for what was to be "routine" check-up.
The nurse called me back to check me in and do my vital signs.
She went on to tell me that during my last visit they had ordered several blood tests, one being a harmony test which had come back showing a 1:5 chance of my baby being born with Ds.
I asked her why this test had been done, as I had refused it.
She did not have an answer for me.
She went on to say that they were referring me to a high risk doctor for further testing and that they would have to get me in right away in case I wanted to terminate my pregnancy. Terminate????? Why???
I wasn't given any other information, just sent away with what may or may not be.
I was terrified.
I had no idea what DS was, nor had I ever met anyone with DS.

How was the diagnosis made?
I went to see a genetics counselor at the high risk doctors office.
They did an ultrasound and found markers on her heart as well as small leg bone growth.
I chose to have an amnio that day to confirm.
I knew, for me, I needed confirmation.
I'm a planner and needed to plan.
I wanted knowledge and that day I had none.
Just prior to the amnio, my friend grabbed my hand, and told the doctor "hold on, we are gonna pray".
And pray she did!
She asked God to show us his mighty hand at work, to use this unborn child as his servant, that no matter what the test showed that He was in control, that this child would be perfect in God's eyes. During the amnio, something miraculous happened.
We watched on the monitor as the doctor slowly began to insert the needle into my abdomen....and it happened...she reached right up and grabbed the needle and pulled really hard, not once, but twice!
My doctor was amazed.
He couldn't believe what he was seeing.
It was like she was saying "hey I am here, I know what is a head of me and I am ready!
I am a warrior!"
My doctor said he had never seen anything like it.

Your baby arrived 6 weeks early and spent 16 days in NICU, what was the process of her care there?
I had an emergency C-section because her heart was "non-reactive" on the monitor, which was concerning them. When she was born she was only 4 lbs 5 oz, but perfect in every sense.
They ordered genetic testing to confirm her diagnosis of DS.
While in NICU, she struggled to eat and required a nasal feeding tube until she learned to suck and swallow.

11 days after being discharged and while at home, your daughter suddenly stopped breathing but you gave her mouth-to-mouth, she was then air lifted to hospital, please explain in detail the Gtube and the Open Heart Surgery?
Izzy developed viral spinal meningitis and was in the PICU for 18 days.
She was able to go home for a few days only to be re-admitted again for heart failure.
Our goal was for her to get to at least 10 lbs prior to having OHS.
However, her heart could not keep up. Simple tasks of drinking a bottle would cause too much stress on her heart. Which is why we chose to have the gtube placed.
Unfortunately, we had no option but to move forward with surgery on September 22, 2014.
Her heart was too weak and could not wait any longer.

There are 3 types of Down's Syndrome
Trisomy 21
Which one is your daughter diagnosed with?
Isabella has Trisomy 21

Is Down's Syndrome hereditary?
Most cases of Down syndrome are not inherited.
When the condition is caused by trisomy 21, the chromosomal abnormality occurs as a random event during the formation of reproductive cells in a parent.
The abnormality usually occurs in egg cells, but it occasionally occurs in sperm cells.
An error in cell division called nondisjunction results in a reproductive cell with an abnormal number of chromosomes.
For example, an egg or sperm cell may gain an extra copy of chromosome 21.
If one of these atypical reproductive cells contributes to the genetic makeup of a child, the child will have  an extra chromosome 21 in each of the body's cells.
People with translocation Down syndrome can inherit the condition from an unaffected parent.
The parent carries a rearrangement of genetic material between chromosome 21 and another chromosome.
This rearrangement is called a  balanced translocation.
No genetic material is gained or lost in a balanced translocation, so these chromosomal changes usually do not cause any health problems.
However, as this translocation is passed to the next generation, it can become unbalanced.
People who inherit an unbalanced translocation involving chromosome 21 may have extra genetic material from chromosome 21, which causes  Down syndrome.
Like trisomy 21, mosaic Down syndrome is not inherited.
It occurs as a random event during cell division early in fetal development.
As a result, some of the body's cells have the usual two copies of chromosome 21, and other cells have three copies of this chromosome.

Apart from your daughter falling into the category of approximately 47% of Down's Syndrome children who have a heart condition, does she have any other medical issues?
She has hypothyroidism, chronic lung disease, low muscle tone.

Does your daughter require a "special" type of paediatrician?

What is your daughter's prognosis for the future in regards to abilities and achievements?
I have to admit this question cut straight to the heart.
The definition of prognosis: the likely course of a disease or ailment.
The world's prognosis:
Down Syndrome Prognosis
Several factors affect a person's Down syndrome prognosis, including other medical conditions that can occur because of this developmental disability.

Now here is my take on it.
First and foremost, individuals with DS are all different just like everyone else. For myself or anyone else to put a "prognosis" on them, I feel would be limiting their capabilities.
Izzy has defied the odds over and over again.
Before even being born, she was facing a possible death sentence (however termination was never an option for me); meningitis; heart failure; lung disease. Countless times I wondered, "will I lose her". 
So now, each day is a gift.
Each and every milestone met is a victory and the ones not met are goals and never defeat!
Do we have challenges? Of course, but so does every family raising a two year old.

Please explain in detail about the "angel in the photograph"?
On the anniversary of the DS diagnosis, I reposted about my experience and sharing her sonogram picture.
One of our followers pointed out that it looked like the face of an angel also in the picture.
I had never noticed it before and it really resonated with my spirit.
I felt as though God had been trying to show me something from that very first day that he was with us and that everything would be just fine.
Please keep in mind, I was going through this alone.
Izzy's birth father was no longer in the picture and all I had was my faith in God and in those early days of the diagnosis, I was desperate for any hope and full of mixed emotions...fear being my driving force, until my faith overpowered fear and God took over.

Please explain in detail about the Isabella 'Amazing' Grace - My Down Syndrome Journey Facebook page?
I remember being with Izzy in the PICU and one of her doctors came in and just started staring at her, not in a bad way. She then spoke up and apologized and said "I really don't know how to explain it, there is just something about her.
Every time I look at her, a sense of peace just completely fills me."
I felt as though God had extended so much of his amazing grace upon our life already that I needed to share that with others.
I wanted the world to see that life may have uncertainties but his grace is amazing and it is sufficient for us.

What advice would you give other new parents/guardians of a Down's Syndrome child?
Let your child be your guide.
Doctors and books and all the information in the world will never teach you the things your child will.
Remember your baby is a blessing, enjoy those early moments, they grow up so quickly!
Focus on the present.
Connect with other families that also have a child with DS.
Be your child's voice.
And of Course....

Welcome to Holland -
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy.
You buy a bunch of guidebooks and make wonderful plans.
The Coliseum.
The Michelangelo David.
The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of people you never would have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
By Emily Perl Kingsley


Help & Support:

Youthreach Kiltimagh

Youthreach Kiltimagh
Balla Road
Co Mayo

Tel: 094-93-81338


Kiltimagh Further Education Centre otherwise know as Youthreach Kiltimagh is a centre aimed at early school leavers.
It gives them a second chance at education.

The Head of Centre / Coordinator Kathy Doherty kindly agreed to an interview with me.


What is the name of the Youthreach?
Youthreach Kiltimagh

When was it established?

What is your location?
Kiltimagh, Co. Mayo, Ireland

What age group is it aimed at?
16 - 20 years old

What subjects do you offer?
English, Irish, Maths, Home Economics, CSPE, SPHE, Metalwork, Woodwork, ICT (Information Communication Technology), Spanish, Engineering, Graphics and Construction, HCT (Hotel, Catering and Tourism), Mechanics, Hair and Beauty, Leisure and Recreation, Vocational Preparation and work experience, Social Education and Enterprise

What is the purpose of Youthreach?
Youthreach gives students a second chance to get an Education.
It offers young people the opportunity to identify options within adult life, and provides them with opportunities to acquire certification.

Who is the head teacher?
Head of centre / Coordinator: Kathy Doherty
Resource Person : Peter Flanagan

How will Youthreach benefit a young person?
From taking part in the youthreach course we aim that the young person experiences success throughout the programme and actively participate in their education
• Personal, social and educational development.
• Promoting independence, personal autonomy and a pattern of lifelong learning.
• Integration into further education and training opportunities.
• Promoting active citizenship and social inclusion.

What exams are taken?
Junior Certificate
Leaving Certificate Applied

When do the exams take place?
Junior cert - practicals - before June and written exams - June
LCA - practicals and orals leading up to June written exam and final exams in June.
LCA is assessed on work completed with the course over the four terms (session 1 - 4) and is awarded the credits if they have 90% attendance (these are called key assignments).
LCA students do two subjects that they specialise in and in these subjects they get examined by an external examiner for tasks they complete in these subjects. other subjects also have tasks for example the Practical achievement task in year 2. The results of their leaving cert is the Key assignments + task scores + practical / oral scores + exam results and they are awarded a pass, merit or distinction

Who grades the exams?
External examiners appointed by the SEC (State Examinations Commission)

When are the results received?
At the end of each session into the next session the students will find out how they got on and gradually get through the 3 terms.
Finally after completing the 4th term (leaving cert year) they get the results in August of that year.
The Junior certs will get their results in September

What qualifications are awarded?
Level 3 - junior certificate
Level 4  - Leaving certificate applied

Can work be obtained through the qualifications alone?
Yes, after completing a leaving certificate but the requirements for many jobs are requiring further study.
Further study advancing on would always be promoted and students are advised in areas where their strengths lie.

What further education / training can a young person go on to achieve?
Typically after completing the level 4 they tend to go on to PLC courses to do a level 5 and then advance onto college. The young person can go onto achieve anything they wish as they are many different routes that can be taken. There is a girl I know who attended a youthreach centre in the west of Ireland and who is now studying for her doctorate (PhD) in Trinity College Dublin and holds down a permanent lecturing Job.

What are the rates of pay per person?
Under 16 & 17 - 40 euro + travel depending on miles from the centre
18 years plus - 160 euro + miles from the centre

What are the rates of travel allowance and who is eligible?
People over 16 not living in Kiltimagh
0-3 miles= 0 euro per week
3-5 = 4.60
5-10 = 11.90
10-20= 17.60
20-30 = 21.60
30-40= 27.70
40-50 = 32.60

How do you promote your service?
Social networking - facebook and twitter.
Meeting directly with school principals.
Printing leaflets.



Kiltimagh Website:

Sunday, 12 June 2016

Hypopituitarism, Hypithyroisism & Osteoarthritis

This is one brave young woman's fight against pain on a daily basis, told to me via interview.


What is your name and age?
My name is Carol Pocknall
I'm 41yrs old.

When were you diagnosed with hypopituitarism?
I was diagnosed with hypopituitarism in April 2015

How was a diagnosis made?
The diagnosis was made via blood tests at the hospital but as there are many elements to the condition I then had further glucagon and insulin stress tests plus a brain scan (MRI)

What symptoms did you / do you have?
The symptoms I had were;
Extreme tiredness
Muscle weakness - couldn't even raise my arms at times
Muscle pain - hips, knees and made my osteoarthritis in my spine worse
Nausea if standing for more than a couple of minutes
Light headedness
Sever headaches
Rapid weight loss - not eating due to the nausea
Lactating even though not, or never have been pregnant
Menstrural cycle totally stopped although not pregnant
Always felt cold - the exact opposite to what I always had been
Passing water more often
Confusion (brain fog) loosing track of conversations, can't find the words I want and not 'computing' what people say
Just generally feeling run down

What causes this condition?
The cause is often a tumour on the pituitary gland (hence I had the MRI) or trauma to the glad.
I have neither so my cause is unknown.

Is there a cure?
There is no cure

Is it hereditary?
It is not hereditary

Are you prescribed medication?
Yes I am prescribed medication.
I have to take steroids (hydrocortisone) three times a day due to my pituitary gland not producing cortisol.
The steroids keep my alive.
Without them I will go into adrenal crisis and could loose my life.
I am on the steroids for the rest of my life.
I have to be careful if I become unwell as cortisol levels will drop so have to increase the steroids.
I have to wear a medical ID.
I also have to inject growth hormone everyday as again, due to the pituitary gland not working I do not produce growth hormone. (Yes I am fully grown but the growth hormone is needed for general well-being, it helps with the fatigue and muscle weakness) I will have to inject for the rest of my life.

What treatment have you received?
No treatment is available, just the medication

How has this condition affected your life?
It has affected my life massively.
Continuous hospital appointments and blood tests.
Can no longer work full-time due to the muscle weakness and pain and fatigue.
Always tired, often need a sleep during the day.
Can't walk as far as I used to - a 'day out' wears me out.
Have to pace myself so I can get through the day.
Feeling stupid when I can't keep up with conversations or blurt out rubbish as I can't find the words I want and anything comes out it it's place.
As an example, I once asked my husband to spray candy floss around the bathroom, I of course meant air freshener.
I also told my brother there was an Eskimo in the fridge for him - I meant a (chocolate) eclair.
Feeling down about weight gain (I know I said weight loss in symptoms but now I'm on medication I've gained a lot of weight)
Not as confident as I used to be.

What advice would you give others recently diagnosed with this condition?
I can understand people being frightened when you're told you have a life threatening condition but there is a huge difference between life threatening and terminal, don't let it make you live in fear.
If you feel unwell, tell your endocrinologist (endo) just because your blood tests may be in range, it could be that you need to be at the higher end of the range so need higher doses of medications - listen to your body.

When were you diagnosed with hypothyroidism?
I was diagnosed with hypothyroidism in April 2015

How was a diagnosis made?
The diagnosis was made via blood tests

What symptoms did you / do you have?
I had all the symptoms as in question 4 but did not realise it was two different conditions.
After diagnosis I learned that the extreme tiredness and later weight gain was down to hypothyroidism

What causes this condition?
Hypopituaritism caused my hypothyroidism

Is it hereditary?
It is not hereditary

Are you prescribed medication?
Yes I take thyroxine daily.
I will need this for the rest of my life.

What treatment did you receive?
No treatment, just the medication

When were you diagnosed with osteoarthritis?
I was diagnosed with osteoarthritis in 2008 ( can't remember the month) after 17yrs of being told there was nothing wrong with me!

How was a diagnosis made?
Diagnosis was made by x-ray (on my spine)

What symptoms did you / do you have?
Excruciating back pain, sometimes preventing me from walking

Is it hereditary?
It is not hereditary

Is there a cure?
There is not a cure

What is the cause of this condition?
General wear and tear

Are you prescribed medication?
I am prescribed medication on an 'as and when I need' basis.
During bad flare ups I have co-codamol (30mg codine) arcoxia and if it's really bad also diazepam.
As much as possible I try to not take medication or self medicate with 'off the shelf ' paracetamol and used to ibuprofen but I now can not take these due to the steroids.
Being in pain 24/7 becomes the norm and you learn to live with it to a certain degree and not rely on the meds.

What treatment have you received?
No treatment.
My spine has tried to repair itself and grown a spur.
A bone spur is an extra growth of bone but it doesn't necessarily grow where it should!
Mine is growing into my nerves (yes that is as painful as it sounds).
I have been told I can have surgery to remove the spur but it will grow back.


Help & Support:

Saturday, 11 June 2016

Guillian-Barre Syndrome (Interview 2)

Melissa Higgs was an active little girl until the age of 5 when she was diagnosed with Guillian-Barre Syndrome.

Despite the symptoms she endured Melissa fought the condition.

Melissa kindly agreed to an interview with me in regards to GBS.


An Interview With Melissa Higgs:

What is your name and age?
Melissa Higgs

When were you diagnosed with GBS?
When I was 5

What is GBS?
Guillian-Barre Syndrome it's a disease that kills all the nerves in your body.
Mine started as my immune system worked overtime to fight a general cold.

What symptoms did you have?
I couldn't walk and had lost all my coordination, I couldn't do anything for myself.
I couldn't feel myself go to the toilet.

How was a diagnosis made?
I had a lumber puncture to determine that it was Guillian-Barre Syndrome.

Were you hospitalised due to this condition?
I was in hospital for 10 weeks.
The doctors said age was on my side and it helped with how quick I recovered.
I was the first child in South Yorkshire to ever have it.

Is it hereditary?
No it's not hereditary

How has this condition affected your life?
If anything the condition had helped as I don't suffer with hardly any illness as my immune system is stronger.

What treatment did you receive?
I had physiotherapy to help me walk.
I had splints made to help me walk again.

What advice would you give others in a similar situation?
I would just say to anyone with it to stay positive and do everything the doctors say!!

"As I am here today to tell my story of
Guillian-Bare Syndrome and how I survived it"


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Friday, 10 June 2016

Bob The Blob - Maisie's Tumour.

Maisie is a beautiful young girl with a passion for dancing and gymnastics.

Over a short period of time things began to change; a squint in her eye, headaches, a weakness in her arm and difficulty in walking.

The result was heartbreaking when Maisie was finally diagnosed with a brain tumour.

After some time in hospital and surgery, it was confirmed the tumour was benign.

Maisie is slowly recovery and taking one step at a time.

Watch this space!
In time Maisie will be back on stage again..

Maisie's mother kindly agreed to an interview with me in order to raise awareness of her daughter's condition.


The Interview:

What us your daughter's name and age?
Maisie, 10 almost 11.

When did you first notice there was a problem with Maisie's eyes?
At the end of November we noticed a turn in her right eye.

What did your optician diagnose it to be?
The optician said that he believed it was a squint - my husband mentioned that he had a lazy eye but his effects his eyelid not his actual eye. 
We have since been advised that Maisie has adult eyes and adult eyes do NOT develop a squint and especially this quickly

How was this dealt with?
He prescribed glasses and referred her to our local hospital for an Opthomology appointment - not as an urgent referral!!

Maisie's gym teacher noticed a weakness in Maisie's left arm, please explain in detail the exercises you taught Maisie and why?
It was Maisie's gym teacher that noticed the weakness - we bought her a gymnastics bar to practice chin ups and also started doing the plank every night to try and build up her arm strength

After a doctor's appointment Maisie was put on a waiting list to see an orthopaedic consultant, why did you pay privately instead of waiting?
When we were referred to the orthopaedic consultant I called to see how long we would have to wait and they said the referral had been received but we would have to wait. 
When the weakness then presented in her leg I called again and was told again that we had to wait - we were not prepared to wait as she could hardly walk so we contacted Spire (bupa) and basically saw the same consultant we would've seen if we had waited but we jumped the queue by probably about 6 weeks

What tests did the consultant do?
The consultant did a full body check testing her strength then sent her for blood tests and obviously the MRI

What result did the MRI show?
The MRI showed the brainstem with the tumour surrounding it

What was the process of the 2 hour full brain and upper body scan?
It was done as a full body scan as at the time we were ruling out everything.
She was conscious throughout the two hours.
It was only meant to be an hour or so but they then needed to put through the contrast dye which at the time we did not know where or why.

When was Maisie diagnosed with a brain tumour?
The MRI was done on 14 January and we were then told on 15 January.

Maisie named her tumour, Bob the Blob, why?
No reason behind the name, we were just having a conversation and I happened to mention that some people name their tumours so she did just that

What was the process of the 7 hour surgery?
The surgery was to retrieve a biopsy of the tumour and also to debulk as much of the tumour as was safely possible to remove

What was the cause of Maisie's lung collapsing?
We do not know why her lung collapsed, we think it was just because her body had had enough and I suppose being face down on the operating table for 7 hours didn't help

How was this treated?
It was treated by ventilation which is why she was put into a coma so that she could be ventilated and to allow her body to recover without having to work to hard. Basically all her body had to do was use her heart.

How long was Maisie in a coma for?
She was in the coma for about a week but it took two weeks for her to come round completely

The tumour turned out to be benign, a low grade known as; Pilocytic Astrocytoma, what was your initial reaction?
One less thing to worry about and we could focus on her recovery

Why did Maisie have a tracheotomy tube?
The tracheostomy was put in to replace the ventilation tube in her mouth as at the time, Maisie's only way to communicate was for her to mouth words to us and with a tube in the way this was not possible

What did That's Life magazine do for Maisie and why?
They will be sending £500 for Maisie to buy an iPad to help with her recovery

Are there any complications to Maisie's health due to the tumour and/or surgery?
Maisie was paralysed after surgery but she is slowly regaining use of her body which will take time. 

What is Maisie's prognosis for the future?
The prognosis is take each day as it comes and whatever use she regains is more than we and anyone expected

What advice would you give other parents/guardians in a similar situation?
Don't ignore anything with your child.
Had Maisie's optician have told us to go and see someone about the eye rather than leaving us in the system for an appointment, Maisie would not have become so weak and things could have been different. 
When it comes to a child there is no price tag on getting a quicker diagnosis.


Help & Support:

Guillian-Bare Syndrome

Sam Powell was a young healthy man until he was diagnosed with Guillain-Barre Syndrome.

Due to his condition, he was hospitalised but thankfully he is now on the road to recovery.

His loving and caring girlfriend Charlotte Coffey stood by him and together they are fighting this condition.

Charlotte arranged an EBay Auction and a Sponsored Walk in order to raise money for Leeds General Infirmary's ICU Department who cared for Sam while he was there.

Charlotte has kindly agreed to an interview with me in order to raise awareness of Sam's condition.


An Interview With Charlotte Coffey:

What is your name and age?
Charlotte Coffey: 18

What is your boyfriend's name and age?
Sam Powell: 19

What is Guillian-Barre Syndrome?
Guillian-Barre Syndrome is an acute disease of the peripheral nervous system in which the nerves in the arms and legs become inflamed and stop working.
This causes sudden weakness leading the becoming paralysed.

When was Sam diagnosed?
Sam was diagnosed 13 March 2015

How was a diagnosis made?
The diagnosis was made by Nerve Conduction Study's, EMG, lumber puncher, number of blood tests

What symptoms did he / does he have?
Symptoms he had were pins and needles in his hands/feet for 2 days then his legs give way..
Symptoms now are just pains in legs and arms (legs most) little bit of weakness and getting hot easily and also tiredness.

What treatment did he receive?
Treatment- immunoglobulin  infusion and rehabilitation such as physiotherapy and hydrotherapy

What medication was he prescribed?
Medication- Gabapentin and citalorpram

Sam was in a coma due to his condition, how long did that last?
Sam was in a coma for 52 hours

How long was Sam hospitalised for?
Sam was in hospital for just short of 12 weeks (was in 2 hospitals)

What are the causes of this condition?
It's not official was causes GBS but some say it's to do with viral injection but Sam never had that so we don't know what caused it other than he had a bump in his car one month before.

Are there any long term complications due to the condition?
No long term complication for Sam but there does be in other people.

Is it hereditary?
No, not hereditary.

Please explain in detail about the EBay Auction.
Rugby League Auction- I contacted a number of rugby league stars on Facebook I library searched all rugby players and who had Facebook pages I messaged.
I informed them about what Sam's condition was and that I'm doing a rugby league auction.
All the players got back to me a lot of them couldn't donate and a lot do donate there shirts etc at end of each season but some got back to me donating signed shirts and signed rugby league balls.
I then arrange to get them from them and then I put them on eBay, posting it all over Facebook and Twitter with the link and then people bidded I raised £1000 from that.

Sponsored walk,- I'm a childminder and raised a super hero and princess walk.
13 children took park ages 1-4 and then they had a sponsored sheet that there families sponsored them.
We went around the wood near my house and they had so much fun.
The papers came and took pictures

What advice would you give others in a similar situation?
If I was to give advice it would be; if one of your family members gets diagnosed get yourself on Facebook on the GBS Facebook group it's such an amazing group with everyone that has been diagnosed with it and friends family and it's so useful to find loads of information and to ask questions.


Facebook: (page) (group)


Help & Support:

Thursday, 9 June 2016

Weight Watchers

What is your name and age?
Clare Louise Hurst 

What is your height?
Height 5.7

What was your starting weight and clothes size?
Starting weighting was 13 stone 1Ib.
I was a size 16 to 18 which was massive really as I was big but not over big.

What is your weight and clothes size now?
My weight now is 10 stone.
I am now a size 12 to 14, which is alot better than I was before as I look so different to back than.

How long did it take you to reach your goal weight?
It took me 12 weeks to get to my goal weight.

When and why did you decide to lose weight?
I lost weight in 2014.
I wanted to lose weight because I wanted to feel better in myself  with people looking at me thinking I was pregnant which I wasn't at all, so that's another reason why I wanted to lose weight as well

In order to lose weight you joined Weight Watchers, what was the process?
The process was to attended every Wednesday evening while the leader Jill talked about how to lose weight and how to do it by giving different examples as well which I thought was a great idea

Did you / Do you exercise?
I started doing exercise like Zumba classes every Tuesday and swimming as well which I do every two weeks and thinking of getting a pass so I can use at swimming baths.

Please tell me what your "before" menu was like?
Before I started dieting my meal menu was always the same.
Breakfast: frosties with sugar on than toast with butter and jam on white bread,
Dinner: cheese and lettuce sandwiches with ready salted crisps and a drink of coke as well.
Tea: sausage chips and beans and bread as well.
Supper: crisps chocolate

What is your menu like now?
Breakfast: Fruit and fibre cereal with skimmed Milk
Dinner: jacket potato with tuna
Tea; salad with tomatoes cucumber ham lettuce with an apple afterwards
Supper: just a yoghurt

When and why did you decide to enter a Beauty Pageant?
I started doing beauty pagents in 2015 because it has always being a dream of mine to do something like that as I am very passionate person and want to make something of myself so I looked into as I thought to myself why shouldn't I go for my dreams life to short do what makes me happy...

What support if any have you received?
My mum was helping me all the way by writing in my book what foods I was eating how much weight I lost.
She really inspired me to lose weight.

Did you / Do you have any health issues as a result of your "before" weight?
I had no health issues at all.

What advice would you give someone wanting to lose weight?
The advice I would give to someone who wants to lose weight, is don't be afraid to do it.
If you want to lose the weight go for it. You will feel better in yourself and you will have support as well.


Help & Support:

Tuesday, 7 June 2016

Pontine Tegmental Cap Dysplasia

Patrick was born with a very rare condition called Pontine Tegmental Cap Dysplasia.

Despite his health issues, little Patrick has fought to stay by his twin's side.

Patrick's mother kindly agreed to an interview with me in relation to her son's condition so as to help raise awareness of it.


The Interview:

What is Pontine Tegmental Cap Dysplasia?
A rare brain condition known in 19 others in the UK, the parts of the brain that are affected are the cerebellum, the brainstem and the pons.
Most children with this condition have one sided facial palsy and a rare eye condition called corneal anesthetisa (no nerves in the eyes) this means my son Patrick is at risk of corneal ulcers and can go blind easily.

When was Patrick diagnosed?
Patrcik is a twin, we went for our 20 week scan where they noticed issues with his kidneys which can be tell tail signs that something is wrong with the brain! Patrick has only one kidney they doesn't function as well as it should.
We were told he wouldn't make the pregnancy from MRI scans when I was pregnant.
We decided to let him lead his own path and make his own journey and he made it past delivery and he's now 15 months!
He was diagnosed properly after a MRI scan at 4 days old.

How was a diagnosis made?
MRI scan and genetics doctor on the neonatal intensive care unit

What symptoms did he / does he have? Patrick has right sided facial palsy, one kidney, corneal anesthetisa, epilepsy, high and low muscle town, unsafe swallow and is fed via gastrostomy (feeding tube in his belly) he has global development delay, auditory noropathy (hearing impairment) he is a happy soul to say he has had a rough start!

What is the cause?
The cause is unknown!
It's believed not to be genetic but big studies are going on in England and America that I know of to try and find out what the cause is.

Is it hereditary?
No, there are no families reported to have more than one child with this condition, it's life limiting so no one with this condition that I know of has been able to reach adulthood and have children

What treatment did he / does he receive?
He has a paediatric consultant that sees him regularly keeps his medicines up to date and he sees his eye consultant kidney consultant and neurologist! Together they all try and keep things up to date.
He has physiotherapy and an occupational therapist too who are helping so much!

What support is available?
We have 16 hours a week for carers to come into our home to help care for Patrick.
We space it out so we can do the morning school run and leave him at home with them for his medicines and they help with bathing and physiotherapy.

What is Patrick's prognosis for the future?
His condition is life limiting, we do not know how long we have our little miracle boy but he has brought us so much.
He is so brave and he has fought so hard for his life and he's just starting to enjoy it, he smiles and interacts he is amazing!

What advice would you give other parents/guardians who's child is recently diagnosed with this condition?
Because it's so rare I searched and searched to try and find families with kids like my boy and I did!
I'd say it's a rough road ahead and the first year is the hardest but you will be the only person that knows your child!
Don't be afraid because your a special needs mum!
Take it all in because you sure don't know how long you have these little miracles for!
Life's about making memories and yes it breaks my heart everyday that my twins can't play together but now I forget the negatives and focus on the positives! Each day is different and brand new.




Go Fund Me:


Help & Support:

Drug Awareness

Drugs are bad!
Drugs affect people's lives in many different ways.
Most drug addicts don't survive however one man named James has kindly agreed to an interview with me because he is a fighter and he has survived.
This blog is to raise awareness on the dangers of drug taking.


What is your name and age?
My name is James and I am 29 years old

At what age did you first experiment with drugs?
I was about 12 or 13 when I first started experimenting with various drugs.

Who introduced you to drugs?
Every drug I have ever tried was always introduced to me by the same two friends I was close with since middle school.

What drugs were you taking?
It started off with marijuana in my younger years, then with alcohol, extasy, mushrooms and then eventually turned into heroin.

How did the drugs make you feel?
Once I found heroin it made me feel more confident in myself and felt like any worry or stress in my life wasn't as bad as I made it out to be without heroin.

How did you fund your habit?
At first I would work as much as possible to support my habit, then eventually came involved in crime.

How often per day/week/month were you engaging in substance abuse?
Once I found heroin I had no other choice other than to use every day, unless if I was in jail or treatment I was getting high and finding any way or means to do so.

On a "come down" how did you feel?
Withdrawing from heroin is the worst feeling in the world.
I have a high pain tolerance when it comes to everything other than withdrawal symptoms, its like constantly having the flu with cramps, diarrhea, restless legs, hot flashes with chills and the worst anxiety in the world, especially knowing all you need is more heroin and you'll feel completely better.

When you were unable to "obtain" drugs for whatever reason, how did you feel?
On days I was unable to get high felt like the worst days of my life, I felt like my world was ending and the anxiety of trying everything imaginable to get high to make the uncomfortable feelings go away was unbearable.
On those days especially I would try to get into a detox so I'd be comfortable until I could get more money to get high.

How did your friends/family react when they became aware of your drug taking?
My friends and family found out I was using drugs from what was a cry for attention from myself.
I was always looking for attention as the baby of the family, and to me negative attention was better than no attention and I put a link in my AIM (AOL Instant Messenger) profile that brought you to a link that said my three best friends with a picture of alcohol weed and heroin, heroin being the emphasis of the link.
My mother especially didn't want to believe it, she was in denial along with me lying saying it wasn't actually true kept her very naive about the situation.

Did/Does other family members take drugs?
Substance abuse does run in my family, my father who I never had a real relationship with is an addict, my cousins, aunts, uncles, and grandparents were either alcoholics or drug addicts.

Did you ever feel guilt or remorse for what you were doing?
I've always had a conscience, didn't matter if I was active or clean my conscience made my using very difficult at times.
98% of the time I ignored my conscience but it would always come back to bother me.
I would use my remorse as a driving force to get clean but also would use the guilt as a great reason to get high so I wouldn't have to feel that way any more.

Were you ever arrested due to the drugs?
Within the first 6 months of getting high I got arrested for a felony charge of larceny from a person and assault and battery.
I was the get away driver but knew what was planned.
I spent 2 years in "house of correction" for that crime, and throughout the next 12 years would either have violated probation or picking up other drug related charges such as possession and shoplifting.

When and why did you finally stop taking drugs?
When I got out of jail I was mandated to further treatment such as a half way house for the next 18 months after my release.
I violated probation over 7 times and what should have been 18 months of drug court took me 5 years to finally complete.
In those 5 years and multiple violation of probations I would be in and out of treatment from getting kicked out of one programme after the next due to relapses.
Once I finally completed drug court and my probation I got on the methadone clinic which I stayed on for 3 1/2 years and for 3 years of that I did really well.
The other half of the year I was coming off the methadone clinic and couldnt handle to sickness and relapsed which took me on another 3 year run.

What support did you receive?
My mother and few close family members have always supported me and been there when I would get clean, without them I may have given up along time ago.
And of course through 12 step fellowships I made friends and received support from them as well.

Do you have any health issues due to the drug taking?
Health issues directly related to my drug use are hep c, which I contracted at 18 years old while in jail, I used in there and shared a needle that was passed around the whole cell block basically.
Along with needing complete set of dentures from my teeth rotting due to drugs and the lifestyle I lived.

What advice would you give to someone who's thinking of taking drugs?
I've always been the type to try to help people anyway I can, and I found when it comes to advice its a touchy feely in the sense of what should be said, how you are saying it and where they are at in there life.
Giving advice to people that are either in the grips of active addiction or potentially thinking about experimenting with drugs isn't a one sized fits all solution so to speak.
When I was younger the older gentlemen would always try to tell me to get this while I am still young, but unfortunately for me I've always been the type that needed to learn first hand, and not very fond of being told what to do.
I've learned now that telling people what happened to me and countless others that I've witnessed first hand helps more than telling someone what will happen to them if they dont stop or if they pick up a drug for the first time.
Everyone likes to think they are different and better than the last person and feel like what happened to you wont happen to me.
For some people that holds true but unfortunately for countless amounts of others it does not.

What advice would you give to someone who's currently taking drugs?
I hope I was able to answer your questions the best I could.
I would like to share a summarised version of how I started and what happpened in between until now so that maybe itll help get a better understanding of what really happened and why.
Its up to you if you want to use any of the information I give in anyway or not. Getting my story out there I feel hopefully could benefit either parents of children that are addicts, parennts in denial thinking I raised my child better, or active users out there that feel like there's no hope for them.

Additional Information:
Growing up you would never imagined I would be the one to become a heroin addict and do the things that I have done in my life as a direct result of heroin abuse.
I grew up in a loving home, my father left as a young boy but my mother was a strong women who did an amazing job at raising and loving two boys, eventually turned into 4 children with my step father and his 2 daughters that she basically raised as her own as well.
We had everything we needed and we were loved.
I was diagnosed with a.d.d as a young boy and developed anger issues from the result of my father leaving and what I witnessed as a really young boy while my father was there.
But growing up on the outside everything looked great, but for me on the inside I was always trying to fit in which was especially difficult since I was a very shy kid.
I always tried to impress people and looked for attention anyway possible. That's how I was all my life.
In high school I joined the JROTC USMC programme and the Marine Corps was my dream, I didn't do well in school due to the a.d.d and I excelled in the JROTC program and eventually enlisting in the USMC and was shipped to Paris Island Boot Camp in Aug 2004, right before leaving I started to get dry skin and didn't know what it was, came to find out it was psoriasis and when I got to boot camp my psoriasis broke out very badly and I basically looked like a walking scab, and because of that I was given an erroneous discharge from the USMC and was sent home.
At that moment I felt like my life and dreams were over.
I didn't know what to do, and I was such an impatient person that even though I was told once it clears up  could reenlist I couldn't look that far ahead and fell into a deep depression.
When I got home and was confused at what I was going to do I started hanging out with my old friends and found out they were into heroin.
They talked about the ups and downs about heroin, but all I heard was basically "attention" and how great it was.
Unlike other people I never tried prescription opioids before then.
I never had much money so I couldn't afford the oxycontin in my area which is what most people started on before "graduating" to heroin.
Everything on the outside of my llife leading up to that night I tried heroin for the first time gave to sign of what was to come.
Once my friend laid out a line of heroin for me I literally stood there looking at it and thinking about it for a good 45 minutes.
Weighing out the pros and cons of what I knew and again all I could think about was the attention I was going to get from it, I was going to have my days filled with people to be around and things to do to get high, not really playing the tape through of how I was going to do it or even what would really happen once I do. I fell in love immediately with heroin and it didnt make me sick or have any real consequences at first.
Within a month of my first time sniffing heroin I used a needle and fell even more in love with everything about using a needle to inject heroin.
From the feeling I got from injecting heroin, to the process of setting up the shot.
Within 2 months of injecting heroin I over dosed for the first time, waking up in an ambulance after receiving Narcan which is an overdose reversal drug widely used. So within the first 3 months of trying heroin I was already using a needle and have already experienced my first overdose, it wasnt off to a great start.
I thought that OD would scare me but after leaving hospital I said I was only going to sniff it, no more shooting it, that  lasted 3 days and I was off again, I stole from my work and got fired, I stole from family and friends, and within 6 months of the first use I committed a felony and was sitting in jail dope sick for the  first time.
I was bailed out after 2 weeks and stayed clean for the next 3 months then eventually relapsed and found cocaine.
I started shooting  both heroin and cocaine and within a month violated terms of bail and was back in jail and spent the next 2 years in jail.
I was able to get high in jail a couple of times where I contracted hep c.
Hep C is so common among IV drug users it didn't bother me much or at all really.
When I was released from jail apart of my probation stipulation was complete a residential treatment programme, for the next 5 years I  was in and out, staying anywhere from 2 weeks - 5 months in treatment before relapsing.
I felt that I was to young to get clean, I didn't have much time or experiences really getting high the way I wanted to.
And that mentality kept me young and dumb for awhile.
Thinking I got this I can do this and stop any time I want to.... I just didn't want to right then.
I would get my mothers hopes up and crush them just as fast, my mother is my biggest supporter, I am a mother's boy and love my mother to death, and she saw something in me that I couldn't see in my self, I was always a good kid with manners and always polite helping others any chance I could, she would brag how great I was when I was clean and although I had an addiction problem it didn't define me as a person, there was more to me than addiction.
She has never stopped believing in me and I have put that women through the ring and back multiple times to the point where I can't comprehend why she could even still love me.
When I finally got off probation I got on the methadone clinic thinking drug replacement therapy would work for me, and it did, for 3 years, where I had 2 children, a wonderful  life with responsibilities and meaning.
What I did not have was a support network other than my family, any treatment in my life other than methadone everyday, and was not prepared  for what I would do when I started to finally come down off methadone, which I did medically correct but wasn't prepared for the uneasy feeling of tte withdrawal symptoms from slowly tapering off methadone, and because I had no support other than my family who as much as they tried to understand addiction really didn't know what was going on inside of me.
And because of my lack of preparation  I relapsed and this is where everything the older gentlemen had told  me while I was in treatment before, that if I didn't get this now that this that and the other would happen, that mommy wouldn't always be there with new clothes money and smokes when I was in treatment, all the old timers in the 12 step fellowship meeting saying that this disease of addiction is a progressive disease and if you don't stay on top of it then it will get to you.
Being young and dumb I couldn't  comprehend what they were saying when using the word progressive. 
I mean I was already injecting cocaine  and heroin, where could it progress to from there.
Well that beautiful family with 2 boys where we were financially secure and had everything  going for our future, took a downward spiral really quickly, I was able to hide my relapse for a while coming up  with excuses of why I wasn't getting paid or why I needed money for this or that, in 6 months I spent over $25000,00 my family money, $10,000 off my mothers money, and $5000 of my girlfriend's parent's money.
Even after they found out about my relapse I was still given chances to get help and come home, my girlfriend's mother even bought us a house to raise our boys in, the house was huge and beautiful, everything we could have ever needed.
But my addiction had progressed so much it was as if I never stopped those 3 years, I could not get clean regardless of everything I had going for me, I needed to destroy everything and loose everything before the thought of getting clean ever entered my mind, I gave up living with my family in that house to go sleep in a shelter, which eventually turned into sleeping on the streets in the toughest form of being homeless.
Here I am living a lifestyle I never imagined I was capable of living.
Looking back at my life wondering  what had happened, bumping into people I knew from highschool and before as they are asking me how did I get to this point, what dramatic event caused me to spiral so out of control?
Well thats the thing and the problem with societies image of drug addiction especially heroin addiction today, they think we did this to ourselves or are so dramatically scared that there is no hope for us, but that is the furthest thing from the truth, we made the descision to pick up that first drug, but after that the unbalanced chemicals in our brains took that desciision to use willingly away, for most its hard concept to grasps even for me it took awhile, I'd hear people say I used against my own will, and I'd sit there and think how do you use against your own will?
Every time I used it was because I wanted to.
But after that relapse and loosing everything I gained in 3 years to finding myself homeless during the worst winters in my area in years in 2015, I was sleeeping outside under a bridge with only a sleeping bag and a tarp over my head that was now only inches away due the the excessive amount of snowfall that winter, looking up at it wishing it would fall on me and kill me because I wasn't strong enough to do  it myself, which I had tried various times over the years, and in total over 12 years OD'd over 18 times that I could remember waking up in a hospital wondering why, how, and who found me and called 911 to save my life, resentful at those people who I did not know for saving my life.
Living homeless under the bridge eating out of dumpsters and  thinking nothing is wrong with living like this, wondering well  at least it can't get any worse than this right?
That's the lie addicts tell ourselves, it can't get any worse than it already is, well it always gets worse, and for me I woke up one day so completely uncomfortable with my lifestyle that it scared me, and that day I sought out treatment where I truly wanted it this time, after multiple attempts at detox facilities and residential programme, psych units and every other treatment option out there I tried again, that's where the spark was ignighted inside of me, I wish I could say I have been clean since that day but unfortunately I had more trials and tribulations to go though, and thankfully I found what works for me, currently today I attend 12 step meetings daily, I am on a medication called Vivitrol which is a once a month injection in the bum that is a oopiate blocker, helps wth the cravings, there are no side effects, no withdrawal symptoms and it doesn't allow me to get high, I could inject myself with heroin right now and I would die before I felt any high off of the drug.
I have amazing suupport from that amazing mother of mine along with a wonderful supportive girlfriend and everything set up for a future I am truly grateful for today.
After 56 detox facilities, 6 psychiatric units, 14 residential treatment facilities, 1 drug replacement therapy programmes, at 29 years old and 12 years of heroin abuse, I have never been more confident about my sobriety and hopefully about my future.
I have not seen those 2 beautiful little boys in almost 3 years due to the lifestyle I couldn't get out of after the relapse off the methadone clinic, I've struggled with the guilt and shame I have from being out of their lives for so long, but with the support I have today I know I will see them again real soon. 
If you were to meet me today, nothing about my physical appearance, nothing about the way I conduct myself today, and nothing I talk about on a daily basis with regular people outside my 12 step meetings would give you any indication of the man I just told you about was really me.
People that know me today and have known me through out my whole life see the change in me today and see the real person I was always suppose to be. so if you think it couldnt posssibly happen to your child you want to think again and look for warning signs, nothing that happened in my life had anything to do with how my mother raised me, she did an amazing job with 2 boys and 2 girls, I made all the bad decisions on my own, without her support I wouldn't be here today.


Help & Support:

Sunday, 5 June 2016

Post Traumatic Stress Disorder

Post Traumatic Stress Disorder otherwise known as PTSD is a psychiatric disorder that can occur after a serious incident or traumatic event.

Rachel age 31 was diagnosed with PTSD just 3 years ago after a series of emotional and frightening events that she has experienced over the years.

Rachel kindly agreed to an interview with me.


An Interview With Rachel:

What is your name and age?
Rachel and I am 31

When were you diagnosed with Post Traumatic Stress Disorder?
Three years ago

What symptoms did you / do you have?  Anxiety, Flashbacks, Nightmares, Depression, Insomnia, Outbursts of anger, Irritability

How was a diagnosis made? 
Through Behavioural Therapy (Counseling)

How was this / is this treated? Sometimes it will be treated with meds (anti depressants).
For me I am blessed to be part of support group on line and I have friends and family that are very supportive.

How does this condition affect your daily life? 
For some it means that they can’t work.  They keep themselves shut up in their house. 
It is their way of coping with it.
For me I try and keep myself busy. 
I have hobbies that I do. 
I love photography and being out in nature. 
That seems to help me regain my thoughts. 
At night for a long time I had to have a baby monitor so that I could hear my mom snoring. 
It helped me when I had a nightmare to ground myself. 
Then I got to the point that I was able to ground myself. 
So, I turned the monitor off and had a small nightlight. 
Now, I don’t have to have that. 
I still have rough nights but I am able to remind myself that I am at home.  Grounding means that I bring myself back to the present. 
Remind myself that what happened is in the past. 
That I am safe now. 
For over half my life I lived in fear. 
I developed PTSD when I was 5 years old.  Life got worse for me. 
My life was lived in fear and with PTSD.

Apart from medication(s) have you tried any alternative therapies?
I am not currently on meds. 
I am trying herbal ways of dealing with things. 
I went through two years of therapy. 
My therapists gave me coping ideas to help me on the bad days. 

What was the cause of your condition? The first cause was my Grandfather passing away. 
Then for 13 years I went through physical abuse. 
22 years of emotional abuse. 
Then in early 2008 I was in a car accident and was also held against my will for two weeks. 
In that time I was brutally raped, beaten, and tortured.
I got away from that and I got married later on that year. 
That ended in divorce because of abuse and my husband raping me. 
In 2009 I went through a rape and ended up pregnant. 
In January my best friend walked out of my life and I lost my unborn child. 
From the time that I was in middle school until May of 2010 I lived on the streets on and off.  That was a great deal of stress and I believe that also contributed to my PTSD.
My biological parents are the ones that caused me all the pain that I am in today. 

Do your friends/family understand your condition and support you?
My family that I have now are super supportive and have helped me through everything. 
I have amazing friends who have seen me through some of the darkest times in my life. 
They all support me no matter what.

What is your prognosis for the future in regards to your condition?
Not sure. 
I also have other health problems that keep me from working.

What advice would you give others who have recently been diagnosed with PTSD?
Get in to counseling, they will give you things that will help you. 
If you can, get in to groups. 
Either ones that are specifically for PTSD or ones that have to do with what you have gone through. 
Reach out, even though it is hard do it.  You will make friends and have people that will be behind you. 
People that understand your feelings because they have been through it. 
Pick up a martial art. 
It will help you regain some power in your life and help you work out frustrations, help you feel safer because you can protect yourself.
Pick up a hobby preferably one where you can get outside. 
I do photography that puts me out in the middle of nature. 

What additional information can you share with me?
These are web sites that I have found that have great information about PTSD.


Saturday, 4 June 2016

Internet Technology: The Good & The Bad.

There are good points and bad points to internet technology however if a person becomes addicted it can consume their life.


The Pros:
*Communication such as being able to connect one person with another via emails, chat rooms etc.
The communicate helps a person to get to know other people from all over the world.
"Information can be found instantly via search engines such as Google and Yahoo.
*Entertainment can be found online such as playing games, streaming videos, listening to music and even reading books. This may be why everyone is so glued to the screens.

The Cons:
*Personal details such as name, age, telephone and address can be seen and used in identity theft.
*Pornography such as violent, sexually explicit, and other illegal things can be easily accessed for viewing using the internet.
*Addiction cam be an issuing when someone can't bear to be with their social media and online games etc.
They spend more time in their virtual life than they do in their real ones.


The Interview:

What is your name and age?
Sarah Kochan, 32

What is your child's name and age?
Emily Hopkins, 8

At what age was she given her first electronic device?
4 & 1/2

What was it?

Approximately how many hours per day was/is she using technology?
She loves the iPad & desktop PC, I would say during the week 2 hours per day but at weekends anything up to 5 hours a day

What was/is her behaviour while using technology?
Quiet, sometimes frustrated (if playing games), moody.

What was/is her behaviour when she is unable to use technology?
Awful, crying, screaming, rude with a back chatting and blunt attitude.

Does she have other activities/interests/hobbies?
Yes she enjoys cross country running, part of a school team and fun runs.
She used to do dancing but recently decided she didn't want to do it any more and also brownies.

Have you tried rewarding her with internet access for a certain period of time by doing basic household chores?
I have mentioned she can't have the iPad until she tidies her room etc.
Or if she is good when we need to do a food shop or pop to town she will be allowed to use it.

What advice would you give other parents/guardians in relation to this?
I would say to limit time from the beginning, when it was new it was exciting to use, but now it's like a need and she's 'bored' if she is not playing on it, not interested in playing in the garden, it's always the toy/activity of choice.
I would also make the iPad stay in the living room and not to be taken all over the house and then hidden in their bedrooms.
I would use the iPad as a treat/ reward.
The iPad can seem a good option when parents need some peace but I would advise against using it for that reason.


If you are a parent/guardian if a child who is addicted to internet technology, what would you do to coax your child away from it?
Please comment below...

Friday, 3 June 2016

Diabetes & Dental Health

Linzi Grant is a young woman with just two wishes;
1: To be pain free
2: To smile again
Linzi is diagnosed with Type 1 Diabetes, she's also suffered severely with Diabetic Ketone Acidosis otherwise known as DKA.
Although no diagnosis has been made in regards to her dental health there is research that suggests the two can be connected.
Linzi kindly agreed to an interview with me in relation to her conditions so as to raise awareness and maybe those of you reading this would like to help Linzi SMILE again by making a donation to her GoFundMe page (link is supplied below)
What is your name and age?
-my name is Linzi Grant and I'm 19
When did your teeth start to crumble away?
- my teeth started to crumble when I was 14/15 years old
What was your initial reaction?
- my first reaction, well I burst into tears thinking oh my God what's happening, I don't get anymore after my adult teeth
When did you start experiencing painful gum abscesses?
- the pain started when I was 15, each back tooth both top and bottom, left and right all were infected at the same time and the abscesses were severely painful, the dentist took all the nerves out of 3 of them and extracted one back tooth as it wasn't save able
On a scale of 1-10 how painful were there?
- on a scale of 1- 10, I'd have days were I was about an 8/9 whilst still on high painkillers but without any medication or ice packs to numb it, I'd say any number way above 10!
When and why did you have 3 teeth permanently extracted?
- 2016, I've had the last ones taken out now because my dentist was meant to put a filling in them after doing a root canal and cleaning them but she didn't and she left them with a huge hole in draining pus and blood out of them for about a year, (it should've only been 24hrs)
When did you start wearing temporary placements at the front of your mouth and why?
I started wearing temporary dentures February 2016, after calling around different dentist to see who could fund them as I'd of had to go private for emergency dentures and because I sneezed and my tooth fell out.
Since then 2 more front ones have fallen out and now have been put on a temporary plate for me
Why is it that you can only eat soft food?
- I can only eat soft food because;
(1) I have no front teeth to bite with, everything has to be mushed or finely chopped,
(2) I can't eat with my dentures in as it's very painful
(3) when I had the two teeth with massive holes draining pus and blood, I couldn't use them as they were painful so chewing was difficult
How has this affected your diet?
- it's affected my diet as I can't eat anything I'd like to, I practically live off mash potato, ham slices, soup and yogurt, jelly and ice creams, because it's so soft and doesn't hurt
What have the medical professionals diagnosed you with or suggested it could be?
-no one has ever diagnosed me with anything or taken it further enough to do any tests, although it's been requested many many times, I've had people respond to my newspaper articles with what it could be but it hasn't showed up anything,
When were you diagnosed with Diabetic Ketone Acidosis otherwise known as DKA?
I was diagnosed as a Type 1 Diabetic in January 2009 at 11 years old.
As a diabetic if your blood sugars go high, you can go into DKA, which happened to me several times throughout the past few years because I had so many infections in my mouth, it made my blood sugars rise and caused me to end up in hospital spending up to nearly a week or two there
What  is DKA?
-DKA is when a diabetics blood sugars go high and it happens when there is a severe lack of insulin which means the body cannot use glucose for energy, and the body starts to break down other body tissue as an alternative energy source. This is where ketones are produced and they are poisonous chemicals which build up and, if left unchecked, will cause the body to become acidic – hence the name 'acidosis'.
It's life threatening to be in DKA as it can be fatal.
What symptoms did you / do you have?
- the symptoms I had were; dizziness; being constantly sick; high blood sugars and when I checked ketones, they were high too; heart racing it's a really horrible feeling
How was a diagnosis made?
-I can confirm I have ketones by testing my blood sugar but when in hospital they checked my acid levels and they were high which is a high indication
What treatment did you / do you receive?
-the treatment is pretty straightforward, a lot of tests are done but I am put on an IV drip straight away which has insulin in one bag and saline in the other as my body needs fluids because I'm dehydrated and insulin to bring the ketones to 0
How has both the above conditions affected your daily life?
- having diabetes affects me everyday!
I have a weaker immune system so I catch everything under the sun just 10 times worse, and up to 8 injections a day can be tough, but teeth falling out left right and centre, now that's a nightmare..
I couldn't think of anything worse
Please explain in detail about the GoFundMe page and please leave a link here?
- I started a gofundme page about a year ago to see if anything would arise from it as I'm just a nursery teacher so I can't afford up to £20,000 worth of implants.
I just don't have that kind of money sitting in my back pocket, but the amount of people so far that have been so generous and lovely has really overwhelmed me
What advice would you give other people in similar situations?
- to people in the same situation, I'd say never give up!
Although it's taken me 5 years.
5 years of going through so much pain and popping so many painkillers, my face always swelled up because pus and blood filled up in my face and mouth and swelled due to reacting.
I've been through a lot  with my teeth and toothache is one of the worst pains I've ever been through, but I know one day someone will be able to help and I will get the smile of my dreams.
Help & Support:
Diabetic Ketone Acidosis (DKA)
Type 1 Diabetes
Diabetes & Dental Health
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Thursday, 2 June 2016

Nick Smith, A Little Man With A Giant Heart

Nick Smith is 34 inches tall which is the average size of a 2 year old toddler and he weighs 28Ibs which is 2st.

Nick maybe small due to "Majewski Osteodysplactic Primordial Dwarfism" otherwise known as MOPD 11 but he has a giant heart.

Nick's mother Shelly Smith kindly agreed to an interview with me so as to help raise awareness of Nick's condition.




An Interview With Shelly Smith:

What is your name and age?
Shelly Smith and I am 52 years old.

Did you have a normal pregnancy or were there complications?
I had some early complications and then as the pregnancy progressed we could tell his growth was slowing down.
At 28 weeks the doctors knew there were problems.
They wanted to do tests.
One of those tests caused ruptured membranes and I was put in the hospital until he was delivered at 33 weeks weighing 2lb 2oz.

Did you have a normal labour or were there complications?
I never went into labour.
The doctors felt once he was delivered he would grow.
I was given steroid shots weekly and they would test the amniotic fluids for a certain hormone the lungs produce when they are ready.
Once his lungs were developed he was delivered by C Section.
Not because of his size and health but because he was breach.

What is your son's name and age?
Nick Smith and he is 24 years old.

What type of dwarfism does he have?
MOPD II (Majewski Osteodysplactic Primordial Dwarfism. Type 2)

When was he diagnosed?
In the 90's very little was even know about this type of dwarfism.
I was told one diagnosis when he was 6 months.
I started to do my own research and saw photos of other children that I felt were more common features.
Then it wasn't until almost 10 years later we meet other families from other states and other countries.

How was a diagnosis made?
In early 2000 about 40 families took part in submitting our medical records such as birth history, growth charts, medical records that we could provide to Doctor Judith Hall.
She and other Genetic Doctors such as  Charles Scott and Dr Pauli to name a few compiled their findings and were able to publish one of the first know medical reference for MOPD.
I am proud to have taken part in a study that in the Doctor's opinion has helped increase knowledge that up til that point we didn't have.
I was able to give a copy to Nick's doctors to help with his care plan.

Did he / does he have any health concerns, if so please explain?
He had to be tube feed thru a G-tube medically placed in his belly from 6 months until he was 4 years.
We have and still do struggle with eating. Other issues are that his type of dwarfism can have bone changes.
Nick had surgery on his hip when he was 15 for a condition know as coxa vera. Then in 2005 he had surgery on his back for scoliosis.
At the age of 18 he developed kidney infections and high blood pressure.
Tests were done and several brain aneurysms were found.
He has had 3 surgeries to correct them. The last surgery was March 2016.
We are so blessed he is doing well.
We see several specialist throughout the year to help with his care.
He is stable but in 4th stage kidney failure.
He takes medication to control his high blood pressure.
Also, yearly MRI of his brain to hopefully catch and fix anymore aneurysms.  

What is his height and weight?
He is 34 inches tall
He weighs 28 pounds.

Does the dwarfism affect his mental abilities?
I wouldn't say that the dwarfism is what affected his mental abilities.
I feel being premature and medical complications did limit his abilities to some extent.
Nick may function lower than some of his primordial friends.
He can't read or write but that doesn't stop him from trying to fit in with everyone else.
He is, in his mind a child that will still grow up.
He can't always remember his correct age when you ask him but he will be quick to warm your heart with his innocence and love of the simple things in life that make him happy like spongebob square pants and super hero's and all the fun gadgets he stuffs in his pockets to surprise those who stop to say hi.
Then in the next sentence telling you he shaves and has 5 girlfriends.

Does the dwarfism affect his life span?
Sadly yes it could.
One big question we parents had in our earlier years, was we didn't know of a lot of adults.
Sadly as we have gotten older we lost many friends like Nick along the way.
In some ways it brought awareness to possible concern for Nick and the doctor has monitored his health to try and correct or address medical issues the best we can.
I am thankful that we have amazing doctors over the years who have been willing to listen to me and reach out to other experts when needed.
I pray that knowledge and continued medical technology can change this and, we will see Nick and all others into the golden years.

How is his condition managed?
I really worry about Nick's care in an emergency situation.
By law where we live, Nick's age prevents him being treated at a children's hospital and he really doesn't fit into the care of an adult, causing us to have to travel out of state to seek the care he currently needs.
We drive 6 hours several times a year to meet with Dr. Ricardo Hanel at Baptist Hospital, In Jacksonville Florida.
Dr Hanel did Nick's recent surgery in March.
The next follow-up visit is scheduled for the end of June.

Please explain in detail what the "potentials foundation" is?
Potentials foundation is a non profitable organization that was started by families and medical staff wanting to help enrich lives of those with MOPD II, I/III, Meier Gorlin, and remarkably similar but not otherwise specified primordial dwarfism by facilitating opportunities for families to meet together and provide information related to known health concerns and specialty care,  and furthering research efforts.
Research remains a primary focus and has resulted in amazing progress leading to diagnosis and proactive medical care.
Nick's participation in this organization has greatly increased his quality of care not just medically but socially.
The friends he has made are his life.
I am thankful to be apart of a group that lets me know WE are not alone and we are all here for each other.


Help & Support:


The Potentials Foundation:


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