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.

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Help & Support:

http://rarediseases.org/rare-diseases/infantile-myofibromatosis/