Jack is 12 years old and lives in Londonderry with his mum, dad, and four older brothers.  

He has two very rare genetic conditions, RYR1 and HECW2, which affect his muscles and cause severe learning difficulties. He also has scoliosis, and uses a wheelchair full time. He is tube fed, and requires 24 hour care.   

Jack gets treatment at Great Ormond Street Hospital every ten weeks. Maura explains “He has rods in his back, so has to get the rods lengthened, and he’s also had a big spinal surgery over there. Because of his genetic diagnoses we see the genetic muscular team over there as well. They’ve taken Jack on because he is so rare.” 

 “I am just so grateful that charities like Family Fund are there for people to reach out to. Having a child with special needs hits the pocket really hard, whenever you’ve had to give up a job, attend appointments all the time, things like that. It’s not easy.” 

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