Monday, 16 May 2016

Ehlers-Danlos Syndrome


Cheyenne Adele Rose is a dancer, however her passion in life has been affected due to the medical condition called Ehlers-Danlos Syndrome.
This young and talented lady can still dance but unlike others she is more at risk of an injury due to her extremely loose joints.
But she is a fighter and through her interview with me we are hoping to raise awareness of this condition which is very rarely heard of.

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Cheyenne Adele Rose featured in the press via;

http://www.independent.co.uk/life-style/health-and-families/health-news/internet-diagnoses-dancer-with-incurable-condition-after-doctors-left-mystified-a7027166.html

http://www.attn.com/stories/8320/imgur-diagnosed-woman-doctors-got-it-wrong

http://www.thesun.co.uk/sol/homepage/features/7146794/Dancer-complained-of-her-recurring-injuries-so-the-people-of-Imgur-diagnosed-her-and-got-it-spot-on.html
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The Interview:

What is your name and age?
My name is Cheyenne Adele Rose, and I am 21 years old

When were you diagnosed with Ehlers-Danlos Syndrome?
I was officially diagnosed on Wednesday May 11th, but doctors had been "hinting" at the idea that I have this condition for months.

How was the diagnosis made?
I went into a pediatric geneticist and he did physical tests, I.E. bending my hands, seeing if my legs and arms were hyper extended, if I could put my hands flat on the ground when touching my toes, etc.

What symptoms did/do you have?
I have extremely loose joints.
Specifically my hips and shoulders dislocate very frequently.
I have unexplained chronic pain, headaches, and a mild Chiari Malformation (another medical issue involving the brain.)

What treatment did you receive?
Unfortunately for this condition, there is no treatment.
The only thing to treat are the symptoms. I have already had two hip surgeries, and I am going into surgery this summer to have my shoulder tightened.

Are you prescribed medication?
Not off the bat.
You can be if you are in too much pain, but there isn't a medication for this condition.

Is the condition hereditary?
It is, but I am not sure where it came from in my family.

Is there a cure?
No there is not.

What type of dancer are you?
I have done all types of dance, but I am specifically focusing on Jazz at the moment!

How has the condition affected your ability to dance?
EDS is a double edged sword when it comes to being a dancer.
It makes you extremely flexible, but at the same time extremely susceptible to injuries that a normal person would not experience.

What advice would you give to others in similar situations?
Don't give up.
It sucks to be told that you have an incurable genetic condition, but there are ways to live a perfectly normal life with this one, you just have to be very cautious of your body.

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Help & Support

http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

http://www.ehlers-danlos.org/what-is-eds/types-of-eds/

https://www.rareconnect.org/en/community/ehlers-danlos-syndrome

Sunday, 15 May 2016

Narcolepsy, The Real Sleeping Beauty

Help & Support

Facebook:
https://m.facebook.com/NarcolepsyAwarenessEducationAndAdvocacy/

Website:
http://www.narcolepsy.org.uk/

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Narcolepsy is a disorder that causes rapid daytime sleepiness.
Most often it can cause muscle weakness too.
This condition can affect a person anytime and anywhere, even while doing normal activities such as talking and eating.

Linzi Nolan, the real sleeping beauty, kindly agreed to an interview with me in relation to her condition.

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The Interview:

What is your name and age?
Lyndsay Nolan-Martin
38

When were you diagnosed with Narcolepsy?
2001

What symptoms did/do you have?
Extreme tiredness and cataplexy (pass out spells due to my emotions, numb and paralysed).

How was a diagnosis made?
A year of tests at the sleep clinic and GP visits.

What treatment/medication did/do you receive?
Modafinil up until 3 years ago when I stopped taking them due to all the side effects and started herbal and natural methods, eg; green tea and lavender.

Is the condition hereditary?
Doctors said it is still a newish condition but some signs have shown it maybe hereditary.

Is Narcolepsy hazardous to your health?
It took me 10 years to start to have some control over my condition after many falls, bumps, bruises, burns on cooker and contributed to me having depression.

Can Narcolepsy cause psychological problems?
Depression.

Is there a cure?
No cure as the medication only slows down the condition.

Are you aware when an attack will occur?
For the first 10 years I was not aware and that's why I had a lot of injuries.
Over the last few years I am aware of an attack which allows me to go somewhere safe to lie and rest for a few minutes.

What do you do to protect yourself before an attack?
Find a safe place and I have my home very spacious so to stop injuries.

What advice would you give to others in this situation?
Research and speak to people with the condition as it can be very lonely suffering alone.
Through narcolepsy I suffer night terrors which means I live out my dreams, this is extremely scary so again find out what other conditions can come with narcolepsy.

Saturday, 14 May 2016

The Wedding Planner Ireland


The Wedding Planner Ireland.

Every couple wants their wedding day to be special, spectacular and memorable.
They want every little detail looked upon and put in place.
Rather than be stressed why not sit down with a wedding planner, such as Patrick Bracken from The Wedding Planner Ireland and allow him to cater to your every need.

Facebook:
https://m.facebook.com/wickloweventmanagement/

Website:
http://www.weddingplannerireland.ie/

__________________________________________

Mr Patrick Bracken from The Wedding Planner Ireland kindly agreed to an interview with me...

The Interview.

What is your name and age?
My name is Patrick Bracken.
I am 35 years old.

What is your business called?
The name of my business is The Wedding Planner Ireland

When and why did you become a wedding planner?
I have always had an interest in planning events, in particular weddings, having planned a lot of weddings for my friends and family.
It was only fitting that I make a career out of it.
As the saying goes 'You will never work a day in your life, doing something you enjoy'

What training/qualifications do you have?
I completed a diploma with the Fitzwilliam Institute in Wedding and Event Planning.

Are you certified?
I am indeed.

What is a wedding planner?
A Wedding Planner is a professional who helps clients to design, plan and manage their wedding.

What does a wedding planner do?
A Wedding Planners job comprises of bringing their clients vision to life.
They're responsible for sourcing and negotiation with suppliers in the industry to ensure that their clients stay within budget while ensuring they get what they want.
As a Wedding Planner you need to have a creative eye for detail and the skill to make your clients feel at ease.
The majority of couples who hire a wedding planner either don't know how to go about planning a wedding or the busy professional.
They may not have the time to put the effort into making their special day all they have dreamed of.
As a Wedding Planner I am with my clients every step of the way from the initial consultation to days following their wedding date.

Do you plan traditional and civil weddings?
I plan and have planned both.

Do you attend the weddings that you plan?
Depending on the package my clients avails of, yes.
If they go for a Full Wedding Planning Package and the Wedding Day Coordination, yes.

Do you have package options?
I have a number of packages available to clients:
1. Full Wedding Planning Service
2. Wedding Day Coordination
3. Venue and Supplier Sourcing
4. Invite Management
5. Reception Planning
6. We also custom design packages based on clients needs.
I am also a supplier of Laser Cut Wedding Invitations.

Do you plan the Honeymoon, if not would you consider doing so?
As part of the Full Wedding Planning Package I include Honeymoon Planning. If a client is looking for me just to plan their honeymoon I would gladly oblige.

Have you ever planned a "themed" wedding?
I have indeed, at present I am in the process of planning a Disney Themed wedding for a client.

Have you ever planned a celebrity wedding?
As of yet I have not yet planned a celebrity wedding but it is one of my goals.

What is your payment policy?
My package prices are based on the requirements of my clients.
All services booked require a non refundable deposit.
With the balance to be paid on the day of the wedding.
Regarding my laser cut invitations my clients are required to pay in full before ordering.
A deposit will secure a special off price until they are ready to continue with the order.
In relation to cancellations.
I deal with these on a client to client bases.

Are you insured?
Yes I am indeed, however I always advise my clients to invest in wedding insurance.

How much of a deposit is required?
Generally a 50% deposit is required for all services.
However as I believe that all couples should benefit from using the services of a Wedding Planner this is always negotiable.

Friday, 13 May 2016

Breastfeeding - Fighting The Stigma!


To Breast Or Not To Breast,
That Is The Question.

Breastfeeding otherwise known as nursing is when an infact latches on to the mother's breast and sucks in order to be fed with natural breast milk.

Breastfeeding is free unlike the powdered milk formula which you have to buy.
It is available anywhere, 24/7 meaning there is no making up of bottles and rewarming them.
Breast milk contains infection fighting white cells that fight against all infections.
Breast milk contains natural chemicals.
It can help prevent SIDS otherwise known as Sudden Infant Death Syndrome.
It has the correct amount of nutrients the baby requires.
It is easily digestible unlike powdered formula which may have clumps due to the bottle not being shaken well enough.
It is the correct temperature unlike the powdered formula which needs to be checked precisely at the right temperature.
Breast milk may also protect against allergies and asthma.
And it may decrease the risk of obesity in later life.

Breastfeeding is a natural way to feed an infant but for Darcie Pennington she was made to feel it was unnatural.
She was humiliated and frowned up by medical professions who should have known better than anyone else that what Darcie was doing was NOT wrong.

__________________________________________

Darcie's Interview:
One young mother's fight for rights!

What is your name and age?
Darcie Pennington age 18.

What is your son's name?
Vincent.

While visiting your grandmother who was hospitalised due to Cancer your son Vincent required feeding.
You began breastfeeding him.
How did the hospital staff respond to this?
On the 30th of april 2016, as a new young breastfeeding mum, I took my son vincent to visit my nan having just had an operation for eye cancer.
Whilst there I walked around trying to settle my son and realised he needed feeding.
I was then approached in a authoritarian manor by one of the nurses, who abruptly told me I needed to sit in a private room as I would make the other visitors feel uncomfortable.
I explained to the nurse that I am well within my legal rights to feed my son in the most natural form wherever and whenever he needed feeding and was shocked by her behaviour.
In my 3 months of being a breastfeeding mum I have fed vincent in shops, restaurants and cafes (all where males present) and have never received anything but kind words and compliments.
I went to sit down with my nan and feed my son, shaking and very upset, the nurse then came over and slammed the curtains shut, telling me that I couldn't feed him as there were males I would make feel uncomfortable.
I explained to the nurse that if he was uncomfortable he didn't need to watch and could close their own curtain but he already had his back to me and couldn't see anything anyway.
I asked her why I was being targeted and why she wasn't promoting breastfeeding as a nurse which I thought was strange.
She told me she was protecting my dignity, I then asked her if I was feeding my son a bottle would I receive the same treatment, to that she went on to say ''bottle feeding isn't sexual'' appalled by this comment I asked her what she found sexual about a baby having something to eat from his mum.
I then had another nurse come over to me and felt very confronted and harassed.
My mother (also visiting with me) and I  quickly got our belongings and left.
I was in a state of shock as being a new mum it's awfully daunting feeding in a public place but I am trying to normalise breastfeeding as its a very natural thing to do, if I wasn't so passionate and they had confronted someone who was new to breastfeeding they could have made them feel like they weren't doing the right thing and to me that is appalling behaviour.
I felt the right thing would to have been to tell the man and his partner to close their curtain as I was well within my rights, but instead I got bombarded and made to feel very insecure and my son was extremely unsettled on our departure from the hospital.

How did the Deputy Chief Nurse respond to your complaint?
I hope my complaint gets taken seriously and nobody else has to suffer the humiliation the hospital nurses have put me and my family through, they also treat my nan with disrespect and didn't seem to care about her feelings and wishes. They were very rude and I will hopefully never have to visit again.
The nurse has since rang me and set up a meeting with the hospital to train staff up on the rights of breastfeeding mothers which I am so happy about.
But I gave the nurse so many opportunities to stand up for me instead and I just got humiliated and belittled.
I accept her apology but it won't change what happened.
If I were a new mum and I hadn't complained, their reaction and attitude could've really made me switch to bottle and that's not OK.

Why did you personally choose breastfeeding over bottle feeding?
The reason I chose breastfeeding:
I never even considered formula.
I have breasts for a reason, for me it just felt natural.
It felt like the right thing to do, and through all the struggles we faced with latching and mastitis, it just made me want to feed more!
It's the best decision I made.

What advice would you give other breastfeeding mothers in similar situations?
If I had any advice for breastfeeding mums it would be; PERSEVERE!
Get help and support and take a stand. Let's normalise breastfeeding together.
I want to offer support and help to any mum wanting to breastfeed because it is daunting and it doesn't come as naturally as people say.
It's a skill that needs to be learnt by mother and baby, but it is worth everything!
When I look down at my son feeding and know I've sustained his life longer than the 9 months of pregnancy, just from my own body, it's the biggest achievement I have ever made.

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Help & Support:

https://www.breastfeedingnetwork.org.uk/

http://www.nhs.uk/conditions/pregnancy-and-baby/pages/breastfeeding-help-support.aspx

Facebook:

https://m.facebook.com/breastfeedinglllgb/

Thursday, 12 May 2016

Dr Dot Stein

Website:
http://www.drdot.com/mobile/index.php

Dr Dot Oil:
https://www.arganlounge.com/index.php/dr-dot-oil-by-argan-lounge-jasmine-scent.html

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What is your name and age.
Dot Stein, age 48.
"Dr Dot"

When did you first start massaging?
I began massaging at the age of 5.
My hippie parents taught me massage techniques.
They often took me to music concerts at my first at the age of 2, which was Melanie.
Then I saw various Grateful Dead shows and other various concerts, including Frank Zappa, even before I was 12 years old.
I became a passionate music fan and knew that as I grew older I would have to find my own way into shows.
I began to use "bodywork" as a way to meet rockers and get into shows for free. I gave my first backstage massage to Def Leppard when I was 15, trading a massage for concert tickets and eventually ended up seeing more than 3,000 shows for free.

How did your childhood hobby become a lucrative profession?
My first paying client was Charlie Watts, from the Rolling Stones, in 1994.
Charlie insisted I had to start charging if I wanted people to take me seriously.
That was good advice!
I then went on three consecutive paid tours with the Rolling Stones.
I eventually went to massage school and got licensed, all while growing my star-studded clientele and assembling a like-minded, world wide staff of over 1,000 “Dot Bots” that I vetted and approved.

How did you earn the name “Dr. Dot?” Frank Zappa gave me the nickname in 1988, as I was massaging him and his band;
He called me “the Doctor”, “Doc” and then eventually “Dr. Dot”, as I was healing them.
So I just kept the nick name.  

What famous celebrities have you massaged?
My clients include hundreds of famous rock stars and celebrities, to name a few would be....
Paris Hilton, Mariah Carey, Russel Crowe, Kanye West, Jay-Z, Bruce Willis, Channing Tatum, Pharrell, Rihanna and many more.

Do you have a website?
website here:http://www.drdot.com/

What massage techniques do you use? 
I developed my own technique over the years, as I did start as a very small child working on my parents and their hippie friends but to describe it in writing to you, I would say a very strong, flowing Swedish massage, with acupressure and a tad of Rolfing thrown in.
But everyone I massage says they have never experienced my technique before.

What are some of the massage techniques that you use, would you consider unique and what benefits do they have?
*Spider Walk:
I "walk" up the back with my fingers, rolling the skin as I go, in one fluent motion, which in my opinion, looks and feels like a big spider walking up the back.
*Pizza Dough Method:
I stand at the patient's side, with both hands wide open, I twist the core of the body in between both hands in a kneading motion, very firmly, like I would pizza dough.
*Bite Method:
My most controversial technique, as no one else does this, but it is the celebrity favourite.
I naturally ask first if they want to try it, and before adding any oil, I bite the whole back up and down in a very fluent motion bit by bit, avoiding any bones.
I take big bites, obviously not firm enough to break skin, but firm and deep enough to go down, grab and "tenderize" the back muscles, warming them up for the real rub down that follows.
*Rolling Pin Method:
Put both forearms on the person's back, with elbows just an inch away from the spine.
Go north towards the head with one elbow; at the same time, go towards the buttocks with the other elbow and then drag them both back together in the middle.
Once again, please avoid bone on bone.
*The Rake:
Make your hands into a "rake" form and keep them like this, very stiff.
Rake the back from top to bottom. This takes a lot of strength when done correctly, but feels wonderful.

Do you use essential oils as part of your massage therapy?
Yes, I use my brand of Dr. Dot Massage Oils.
Dr. Dot Massage Oil is an invigorating, high performance and multi-purpose oil available in three different scents to accommodate every occasion: Jasmine to energize; Lavender to relax; The House Lounge fragrance for a sexy and seductive night.
With 96% of high quality of eco-certified Argan Oil the skin will be hydrated and moisturized during the massage process with Dr. Dot Massage Oil.
Yet, unlike other massage oils, Dr. Dot Massage Oil will not leave greasy residues on your skin, but will be absorbed within minutes after application.
It is very important to use a massage oil with multiple purposes and tastes.
I’m a mother of a 3 year old, and on top of that I run a business with more than 1,000 employees, so I know that time is a very precious commodity.
You don’t want to mess around with 20 different body care products for each area of the body; you want a one size fits all type of tool and that’s exactly what Dr. Dot Massage Oil is.
Using a cheap cream or lotion will ruin a massage as it will ball up constantly and annoy the client as well as the therapist.

What qualities should a client look for in a massage therapist? 
Experience, strength, dependability and clients should be able to FEEL if the therapist loves their job or not.
If they can not feel it, time to find a new one.

What should a client expect from a good massage session?
A warm, strong, silent, relaxing experience that leaves them feeling rejuvenated.
They should expect a quiet therapist. There is nothing worse than a chatty massage therapists.
It is counter productive for both the client and the therapist.

What training/qualifications do you have? Deep Tissue Massage, Medical Massage, Reflexology and Anti-Cellulite Massage (VERY painful but effective) 

Where are you located?
I am Hoboken, NJ and sometimes and my other home in Berlin, Germany. 

Do you attend private sessions from a person's own home?
My whole company is out call (we deliver to homes, hotel, venue, studio and office)

How long is a session with you? Minmum of 90 minutes but some clients, including Adam Levine and Matisyahu receive 4 hour sessions from me. 

What does the session consist of? Deep Tissue massage. Scalp, face, feet- everything except THAT area. Some clients want my bite method before I put the oil on their backs to tenderize them, like a steak... sounds odd but it feels sublime. 

At what cost is a session?
Starts at 150 euro per hour (rates rise after ten pm, then again after midnight, then again after 2am, etc)

How do you promote your business?
I don't.
Word of mouth.
It has always been that way. 

For those reading this blog who want a career in the massage industry, what advice would you give them?
Always opt for Deep Tissue.
You can always go lighter but you need to be able to give a sports massage/ Deep tissue as people want to really feel it, they don't want to be pet.
Also, I would advise all male therapists to study to be a chiropractor first then take deep tissue/Sports massage classes. Why? 90% of clients ask for a female therapist.
Even the females.
But if you are also a chiropractor or acupuncturist, you will be heavily sought after

Tuesday, 10 May 2016

He Ain't Heavy, He's My Brother

Facebook:
https://m.facebook.com/cerebralpalsyswagger/
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An Interview With Danielle Gandee (Braden's mother)

What is cerebral palsy?
An injury to the brain that happens before, during or shortly after birth that results in muscle tightness, weakness, and/or lack of coordination.

How old is Braden?
9 years old

When was Braden diagnosed?
We were told at birth he would most likely have Cerebral Palsy but the official diagnosis came at his 1 year check up

How was a diagnosis made?
He had many tests in the first few weeks of life including ultrasounds and MRI that showed the actual damage to his brain

What symptoms did/does Braden have? Braden has spastic Cerebral Palsy, involuntary tightness in his legs and right arm and weakness in his torso

What treatment has Braden received? Braden receives physical and occupational therapy 7 times a week, has participated in hippotherapy, aquatic therapy, constraint therapy, conductive education, medicine, botox, bracing and casting and last June he under went a major spinal surgery known as SDR.

What causes cerebral palsy?
Cerebral Palsy can be caused by a stroke, a brain bleed, head trauma, lack of oxygen or many other injuries to the brain

Is this condition heredity?
No, it is an injury to the brain

Is medication prescribed, if so what?
No

What support was/is available to Braden's family?
We are our support along with Braden's medical team that includes therapists and doctors and his school.

Does Braden attend a regular school or does he receive special education?
He is in a typical classroom.

What does Braden enjoy doing in his spare time?
Braden loves wrestling!
He loves watching Hunter and Hunter's team which is University of Michigan wrestling, Team USA Olympic wrestling and WWE.
He also enjoys participating in wrestling himself.
He likes robots, video games, lego's swimming, horseback riding, vacations and hanging out with his family and friends.

What type of personality has Branden?
He is very social, fun, silly, talkative and energetic.
He is smart, determined and kind.

Hunter is Branden's elder brother, how old is he?
Hunter is 16

Hunter carried Braden on his back, how far was the journey?
In June of 2014 the walk was 40 miles, in June of 2015 the walk was 57 miles and this final walk April 20-25, 2016 was 111 miles.

Where was the start and where was the finish?
In June of 2014 the walk was from Bedford Junior High School to the University of Michigan's Bahna Wrestling Centre.
In June of 2015 the walk was from Braden's school Douglas Road Elementary School to the University of Michigan's Pediatric Rehabilitation Centre and this final walk April 20-25, 2016 was from Bedford High School to our State's Capital, Lansing, MI.

What is The Cerebral Palsy Swagger?
Hunter is the oldest of four children.
He is 16 his sister Kerragan is 15, brother Braden is 9, and the youngest brother Kellen is 8 yrs old.
Braden was born early at 32 weeks and complications resulted in him having Cerebral Palsy.
We describe Cerebral Palsy as an injury to the brain that makes the muscles squeeze tight, be too loose or uncoordinated.
Being the oldest and very excited to have a baby brother, Hunter was always involved with Braden.
He would read to him and play with him and he attended therapy with Braden when he could.
With 6 years between them Hunter and Braden grew at the same pace, and it wasn’t long before Hunter was carrying Braden on his back, slowly becoming Braden's legs.
Watching Braden and seeing some of the difficulties he was having, Hunter decided he wanted to try to make a difference, not only for Braden but everyone who has Cerebral Palsy, and education is the starting point of all change.
Hunter is very active in school and sports. He maintains all A's, is president of his Student Council and was the president of his National Junior Honor Society, plays football and earned his Varsity letter in Wrestling.
His teachers, classmates and teammates see him as a leader both in the classroom and out.
He has many friends and has influence on an even bigger number of people.
He decided to start the education for change right there, with his friends and classmates.
March 25, 2014, Cerebral Palsy Awareness Day, Hunter and his fellow Student Council members sold green rubber wrist bands that said “Cerebral Palsy Awareness" for one dollar at school during lunch periods.
They displayed posters with facts about Cerebral Palsy and even brought in Braden for a brief Q&A session.
They raised $350.00 which was donated to the University of Michigan’s Cerebral Palsy Research Consortium. 
At that time Detroit's Channel 4 News, the University of Michigan, and Mott Children’s Hospital ran newspaper articles and television stories about his campaign.
But Hunter wasn’t done yet! 
He wanted to do more, teach more people, find a way to inform the entire community.
After all, this community is Braden's home.
The more they know about Braden and Cerebral Palsy the less questions, stares and awkwardness there will be and the more ideas for change there could be.
Hunter created THE CEREBRAL PALSY SWAGGER!
The Cerebral Palsy Swagger Walk of 2014 was hoped to be a 40 mile walk over 2 days in which Hunter would piggyback Braden from the wrestling room at Bedford Junior High School to Bahna Wrestling Centre at the University of Michigan.
Wrestling room to wrestling room because wrestling was physically the hardest thing Hunter had experienced just as mobility is Braden's.
School to school because educating was the primary focus.
Hunter carrying Braden because it demonstrates love, support, and teamwork all of which are needed in order to make the changes Hunter was hoping for.
Two brothers, accompanied by their family and friends, walking through the streets introducing people to Cerebral Palsy.
The goal was to get the attention of the up and coming leaders, doctors, engineers and entrepreneurs and show them a face of Cerebral Palsy and the need for innovative ideas in mobility assisting devices and medical practices.
An idea was dreamed, a plan created, a route drafted, social media pages opened, emails sent, letters mailed, flyers hung and when the media caught on the story went worldwide.
They began doing interviews on a daily basis promoting the walk, explaining what Cerebral Palsy is, and showcasing Braden's daily struggles (ex. Braden's walker manoeuvring through grass, mulch, gravel, sand, snow etc.)
The boys began training and testing different carriers. 
A huge "Send Off" was organized by the Bedford wrestling program and Bedford Junior High and the "Finish Line Party" was sponsored by the University of Michigan's Wrestling Programme.
Saturday June 7, 2014 - The walk started on a bright and sunny summer morning. The pace was good, the spirits were high, the boys were entertaining each other and everyone was having a blast. Hundreds of people came out to show their support.
Some people made signs and cheered as the boys passed; some opened their yards and homes to the boys during rest stops; some handed out water, fruit and snacks; some walked a mile with the boys; some walked many miles.
Hunter was fortunate enough to have 5 friends walk the entire 40 miles with him that year-Kyle, Brady, Darric, and Cole as well as Chris Heald a Michigan wrestler who he had never met until that morning. Mile after mile they pushed on but by evening the exhaustion began setting in as well as soreness and blistering.
A prayer with a friend, well wishes from supporters and the encouraging cheers from Milan provided the boys the strength they needed to stagger into town that night at 10pm.
Sunday June 8, 2014 - Chafing, blisters and muscle fatigue woke the boys on that cold and rainy morning.
They suited up, friends and umbrellas in hand, and set out to push through the 2nd half of the walk.
A few miles in, Braden was in a great deal of pain.
No matter which carrier Hunter used Braden's legs had constant friction with Hunter's back and with the damp conditions Braden had blistered and the blisters had opened to raw skin, to avoid that position totally, Hunter cradled Braden in his arms and carried him that way, arms burning from the weight, until the next rest stop.
About to give up on the idea of finishing piggyback style, Hunter asked Braden if he wanted to finish the last 10 miles in a stroller; Braden bravely declined.
Again, Hunter called on his friend, Levi, to pray with them.
This time it was Sunday morning and Levi was in church.
The whole church prayed.
We contacted Braden's therapist, who was also in church and her church prayed as well.
Within minutes 2 therapists, a rehab engineer and a nurse all showed up with ideas and supplies.
Adjustments were combining the carriers and hospital grade bandages were applied to Braden's wounds.
The sun started shining, smiles returned and the boys were ready to complete the walk.
And they did just that with Braden on Hunter's back every step of the 40 miles.
The walk was not for money, it was purely an awareness project, but many people who could not join in the walk still wanted to be a part of it and insisted on doing something.
During the walk $15,000 was collected and donated to the University of Michigan's Cerebral Palsy Research Consortium.
The University used a portion of that money to host a medical conference on updated information and research regarding Cerebral Palsy on March 25, 2015.
The boys were special guests at the conference.
After the Cerebral Palsy Swagger was featured on NBC Nightly News even more people reached out and wanted to give but now they wanted to give directly to Braden.
Not comfortable with accepting money, they thought long and hard and decided the best way for these people to be able to give was to create a new project, an inclusive playground for Braden's school. At the time Braden's school, Douglas Road Elem, only had one handicap accessible swing and the entire playground was enclosed in mulch so Braden spent most of his recess off to the side watching his friends play.
They teamed up with the school and PTA (to be 501c3 compliant) and began the process of choosing a playground company and then a design.
The playground was named The C.P. Swagger Shipyard, with a pirate's ship as it's centre.
They created a dream plan for the playground with an estimated cost of $350,000 and then phased it into smaller projects.
To date they have raised almost $200,000 of the $350,000.
The first walk was such a success that Hunter decided to do a second Cerebral Palsy Swagger Walk only this time it would be farther, by 17 miles, travel through new communities and hopefully educate more people!
Friday June 5, 2015 - This walk left directly from the ground breaking ceremony of the playground.
All 600 of the students from Douglas Road Elementary School walked the first half mile starting things off with an extra kick of energy!
It was a pretty nice day outside of a short early rain and things went smoothly! There was a stop in the town of Ida for dinner and the day ended camping out in tents at Wilderness Campground.
Saturday June 6, 2015 - The boys woke up and started the long day at 8 am.
The first half of the day consisted of walking through Dundee and into Milan for lunch.
Things were going good with great weather and a group of about 20 strong. As the day wore on, things began to get more and more difficult.
Soreness and fatigue really set in the last couple of miles.
Rest and stretching by U of M therapist's was important during rest stops as Hunter’s hamstrings were tightening up very quickly.
Darkness fell with about one mile left to go for the day, and there they reached the most difficult point in the walk.
By the time they reached their destination, a hotel in Ypsilanti, Hunter was so exhausted he actually collapsed to the pavement, Braden still on his back. A few of Hunter’s friends quickly reacted unstrapping Braden and pulling him off, and helping Hunter back to his feet.
A prayer was then said and it was time to recover.
After lots of stretching, a quick dip in the hot tub, and an ice bath, he crashed for the night and started resting up for the final day.
Sunday June 7, 2015 - Hunter woke up the next morning to tight and sore muscles, but with determination to finish the last day.
The last day’s route went through the campus of Eastern Michigan in Ypsilanti, into Ann Arbor, and the through the University of Michigan’s four campuses, the athletic, central, medical, and north campus.
They reached the finish line at the University of Michigan’s Pediatric Rehabilitation Center around four and arrived to cheers and applause from a crowd.
After interviews, pictures, and words with the crowd, Hunter and his family and friends gathered inside to celebrate over lunch.
The second Cerebral Palsy Swagger was covered by Sports Illustrated.
Shortly after the second walk Braden had a big surgery, Selective Dorsal Rhizotomy. The doctors opened four of his vertebrae, exposed the nerves and severed 70% of the ones that over reacted when stimulated.
This was done to eliminate some of the spasticity in his legs in hopes of avoiding bone deformities.
The surgery can also allow for a more typical gait pattern and can increase the possibility of building up the muscles needed to walk independently.
Braden spent two weeks in Mott Children's Hospital and the rest of the summer in intensive therapy.
During this time the boys took a break from all of their projects and concentrated on Braden's recovery.
But as soon as school started up they were back at it.
It was early September when it was decided that the new playground would be installed as a "Community Build" project.
On October 1, 2015 the playground pieces arrived at Braden's school.
Sun up until sundown for the next three weeks volunteers worked to assemble the play structure.
People from all around came and donated whatever they could; food, tools, equipment, their time and their talents. Hunter spent every free second working alongside the volunteers and Braden watched from close by.
One day at a time, one piece at a time, one volunteer at a time the vision became reality.
October 26, 2015 was the Grand Opening and ice cream social.
Sports Illustrated and NBC Nightly News both came back to cover the event. Finally, Braden has the freedom to play with his friends and the boys were able to better their community by adding an inclusive playground for all.
Many other opportunities arose from this walk.
The story ran in the media all over the world including the NBC Nightly News on four separate occasions, Today Show, Fox and Friends, GMA, Ellen's Show online, People, Family Circle, Yahoo, Scholastic News, CBS's Courage in Sports, Sports Illustrated, and the Associated Press.
They were recognized at the National Inclusion Project's Gala, brought out on the field and their story played in front of 100,000 people at a University of Michigan football game, the story was played and they threw out the first pitch at a Detroit Tiger's game, a Toledo Mud Hens game, and a Lansing Lug Nuts game, and WWE shared their story through Twitter and hosted the boys for a VIP night at RAW in Cleveland.
The boys were recognized by their school district and Monroe County, United Cerebral Palsy of Metro Detroit, the National American Legion Auxiliary, Michigan State Representatives Jason Sheppard and Dale Zorn, Michigan Governor Rick Snyder and Lt. Governor Brian Calley.
They have been given numerous awards for our accomplishments.
In May of 2015 Hunter was the Prudential Spirit of Community Michigan High School State Honoree and went on a trip to Washington DC where he met Michigan’s Senators and interacted with student leaders from across the nation. He won the Governor’s Service Award for Youth service, was a finalist for the Governor’s Fitness Award for inspiring story, won the Bill Treasurer Open Door Leaders Award, the Presidential Service Award, the Sports Illustrated High School Athlete of the Month, the Monroe County Academic All Star Award, the Youth Jefferson Award, R.J. Mitte and Shriners Hospital recognition, and the Bedford Now Citizen of the Year Award.
Through these efforts and publicity, they've gotten the attention of engineers and now three different teams are working towards re-designing walkers for improved mobility in all terrain.

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Help & Support

http://yourcpf.org/

https://www.cerebralpalsyguide.com/

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Internet Troll


An "Internet Troll" is someone who creates fake online profiles in order to bully, intimidate, lie and steal another person's information for their own gain and pleasure.
They often feel sadistic glee at knowing they have caused sadness and distress to others.
For trolls such as Katie/Amber/Sierra the internet was her perfect playground and she had fun playing with other people's lives.
Sadly for Kelly and many other young mothers, they became a pawn in Katie's games.
The victims are NOT to blame, it is not their fault.
Some might say "don't feed the trolls" in other words suggests that doing so gives the trolls more power as they thrive on knowing they have antagonised another but its not as simple as that.
The victims try to ignore the trolls but if the trolls are constantly there in plain view there is only so much the victims can do before confronting them and fighting back.

This is one woman's terrifying story via interview of how her life was stolen by an internet troll.

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When and why did you join the social networking site Facebook?
I joined Facebook when I was in high school about 2008-09, to keep in touch with family & friends.

Why did you share your baby's scan photos and baby's photos on Facebook?
I shared my scan & baby photos on Facebook because I wanted my family & friends to see & I was a proud mum-to-be/new mother and wanted to show her off.

You were informed that a woman called "Amber" was sharing your baby photos on the website Instagram and claiming they were her own, what was your initial reaction?
When I was first told about the fake Instagram account I just got a nervous laugh because I thought it was some kind of joke but after a few minutes I realised no one with the right frame of mind would make a joke like that then the penny dropped.

You informed your partner, what was his reaction?
I told Ian (now my ex) & at first he was quite laid back and said ''oh its probably some kid, just ignore it, it will be gone tomorrow" until about a week down the line when he realised the person behind this account wasn't giving it up.

Through Blackberry you set up a fake account in order to contact the woman, what did you say and what was her response?
I added amber/Katie on BlackBerry messenger and as soon as she had accepted my request I saw red & sent her a long message asking why she's doing it and where she even found me, because she was from down south & I live in the north west.
She then told me she found me on 'The McParents Page' on Facebook, (a group for mothers).
She told me she had a still born daughter around the time I had given birth to my daughter Macie-Lea & it was a way for her to grieve.
I instantly felt sorry for her & kind of understood why she was doing what she was.
Amber/Katie then said sorry and promised to delete the accounts, but she didn't & I found out later that the stillbirth story was also a lie.

In addition to this you still felt angry and upset but she had agreed to remove the images and you decided not to pursue it any further, what happened next?
After that I decided I needed to put my Instagram & Facebook on high security and and deleted most people I didn't recognise, I have around 2,000 friends on Facebook so it was difficult to go through them all but that didn't bother me as I had put my Facebook on high security so I should be fine (so I thought).

Through Instagram you were infirmed by a group of mothers that Amber's real name was Katie and despite your efforts she was still continuing to steal your photos from your Facebook account and pretend they were her own, how did that make you feel?
Katie/amber was still getting photos of Macie-Lea & I knew the photos she where getting were only on Facebook so I knew she was on my friends list somehow.
I thought I'd never be able to stop her so I carried on with day to day life after that & tried to put it to back of my mind.
One day while scrolling through Facebook I saw a friend Sierra Sattenfield upload her status saying she was pregnant with twins with a twin scan photo, I knew straight away I had seen that photo someone else earlier that day, so I carried on down my news feed & seen the exact same scan photo on an advertisement so that's when it clicked that Sierra was Katie.

Katie/Amber upped her vile game and publicly accused you of "stealing her photos"
What happened as a result of this?
Katie/Amber sent a broadcast message on BBM (Blackberry Messenger) saying she would now have to watermark her photos of Macie-Lea because 'some bitch' (me) was stealing them.
I questioned her on how she would carry on pretending to be Macie-Lea's mum now she won't have access to my Facebook anymore because I had deleted the Sierra account & she responded with ''it's all good, I'll just say her dad killed her'' I was disgusted & thought no body could stoop so low until somebody had sent me a screenshot saying she had said "RIP to my beautiful daughter, died due to her father shaking her''
I was in complete shock that anybody could make this up, I felt sick, people thought my baby's father was a baby killer!
Anybody could believe that and potentially put him in danger.

Katie/Amber/Sierra was eventually taken to Crown Court and was sentenced to three years in prison.
Do you think that was the right punishment for her?
A few weeks past and I had found out she was going to court I was so relieved & I was glad she got sent down for 3 years. But I don't think any jail sentence would change her, she needs mental help not jail.
I 100% think she will carry on once she's released from prison.

What advice would you give to others in similar situations?
If I could give any advice, it is to NOT trust the "mummy groups" on Facebook or any social network.
The mums who add you off them might seem like they're being friendly but you haven't a clue who is sat behind that computer screen.
Keep your social networks private and limit who you are friends with and and be careful were you post your pictures & information.

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Help & Support:

https://www.getsafeonline.org/

https://www.victimsupport.org.uk/crime-info/types-crime/fraud