William was born with an undiagnosed neuromuscular condition which has left him with a long list of life limiting complications and developmental delays. He doesn’t walk or talk, and can stop breathing with very little warning requiring resuscitation. Because of this he must always be accompanied by 2 people trained in paediatric life support.
William spent the first 2 and a half years of his life in hospital before starting a phased discharge home. He has come so far from his first year, when life threatening episodes were a daily occurance, he was invasively ventilated, we could get no emotion from him whatsoever and his outlook was dire. He now recognises familiar faces, smiles, laughs end enjoys life. He is 4 years old now and has been at home full time for just over a year with his older brother Jamie, Mum, and Dad. Despite his many problems, you could not wish to meet a more pleasant and happy child than William!
All of his feeds and daily medicines are given via a gastrostomy because he has an unsafe swallow meaning that food has a good chance of ending up in his lungs if eaten normally. He sleeps with a non-invasive ventilator because he is most at risk from his particularly dangerous brand of apnoeas when asleep. He is also permanently connected to a SATS machine to monitor his oxygen levels.
Most of William’s progress is being made in his movement and physiotherapy sessions. He can comfortably sit up unaided for long periods of time and is tolerating bearing his own weight in a standing frame. He cannot yet crawl or otherwise move about a room but we are hopeful that one day he may be able to stand and take a few steps.
We have recently secured a place in a local special needs school and we are optimistic about the progress he could make there. Everything is in place for starting in the new year and William is ready for the challenge. ?
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.