Jack was noted with severe problems at 26 weeks having felt no foetal movements. He was born at 37 weeks by section but not expected to survive. He was ventilated for 13 weeks having went through numerous genetic tests and muscle and skin biopsy all came back inconclusive. Jack came home on o2 and tube feeds and from there we have had 100's of appointments.
He's now 7 almost 8 and has had lots of surgery - double hernia repair, tonsils removed, lumbar puncture, 6 MRIs, CT scan, skin muscle biopsies, insertion of harrington rods for scoliosis and 3 lengthening surgeries, numerous surgeries for peg placement and now hes jej fed so gets it changed every 3-6mths, has physio and speech therapy weekly and goes to Kilronan special school. He is fed over a 29 hour period to keep his sugar levels stable. He has severe reflux, doubly incontinent, optic atrophy, wrist and feet contractures. Jack still can't talk, walk, or eat anything but he does understand what you say to him. Hes a happy wee boy most of the time and certainly our wee miracle.