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Jordan Perez And Family, Co Clare: SMA Type 2

SMA Story: Jordan Perez and Family, County Clare

Hi there! My name is Jordan Perez I am 10 years old and I suffer from SMA Type 2. My Mum will tell my story.

A bit about Jordan

Jordan is an intelligent sensitive 10 year old boy. Like many people affected by SMA he is very high functioning and reads at a level a few years ahead of his own age group. He is very social and independent and has loads of friends from school and the estate where we live that he pays with all the time. This summer of 2018 has been particularly great for Jordan as he has been out playing pretty much all day every day, with short returns home when he sees the power low on his power chair. He has a fantastic tan.

It hasn’t always been good though. A few years ago Jordan had a cardiac arrest and we nearly lost him. He’s had numerous chest infections and other normal respiratory disorders that have put him in danger. He has an extendable rod in his spine to help correct the worst of his Scoliosis and needs operations once a year to have it extended as he grows (like a weed by the way).

 

Watch My Video

View The Demo

Hi I’m Jordan and I’m a busy active 10 year old boy. In my video I’m challenging Simon Harris to play me at any playstation game, winner take all, to get Spinraza available in Ireland for people like me.