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 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!
We have adapted to home life with William as best as we can, and dedicated the living room of our 2 bedroom bungalow to William and his equipment. We are able to bathe William in the shower cubicle in our bathroom, but we are worried about how long we can continue to do this as he is getting bigger and heavier all the time. The only place we can relax together as a family is in William’s bedroom, and getting his wheelchair and other equipment in and around the house is tight in most areas and impossible in others.
We have been awarded a disabled facilities grant (DFG) to help with adapting our home to better meet William’s needs, but the figure doesn’t cover half of our cheapest builders’ quote.
The money we are raising is to supplement our DFG to provide our home with ramped access to the front and rear, a wetroom to shower William, a bedroom suited to his needs with a ceiling mounted hoist, and give us back as a family our living area which can accommodate us all.
We are grateful for any help which gets us closer to being able to accommodate William into his family home and allow us as parents to celebrate his continued development without worrying about how we are going to look after him as he grows.
Thank you for taking the time to read this!
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.
