Emma, whose son Ted has full-body cerebral palsy, shares their story:
Ted was our first baby (we also have an 18 month old daughter, Dilly). I had a problem free, full-term pregnancy. But Ted got into distress at birth and experienced a prolonged period of oxygen deprivation.
He was transferred from Kings to St Thomas’ for cooling treatment which is thought to limit brain damage. He spent about four weeks in various special care rooms.
Living with full-body cerebral palsy
Ted was three months old when the consultant gave us the diagnosis of full-body cerebral palsy. My husband Rik and I were devastated. But also felt a sense of relief because at least we now knew what we were dealing with and we could start figuring out what it meant. In the beginning, Ted was very irritable and cried all the time. He is four and a half years old now and so much happier and settled. He has a lovely personality and sense of humour so we have good fun with him.
He struggles to control his body and experiences severe muscle spasms. He is in a wheelchair and struggles to control his body so he is 100% reliant on others. We do our best to have as normal a life as possible. We take Ted to festivals. Twice a week he goes to both a main stream and a special needs nursery and he loves being out and about in town seeing people. He likes swimming and absolutely loves the supermarket, he whoops for joy when we turn into Waitrose car park!
What we’re doing to help children like Ted
Having a disabled child means that even simple activities can be difficult so the right equipment is key. Ted can’t speak so we spend time showing him how to communicate using eye-gaze technology (you move the cursor with your eyes). And we have been lucky to be involved in Dr Tim Adlam’s chair trial. It’s brilliant because it is designed to move with Ted. It supports him and works with him instead of working against him. This kind of equipment is revolutionary and means Ted can do normal everyday things and we are all able to have as stress-free a life as possible.
Read Emma’s interview with Sparks-funded Dr Tim Adlam, who is working in assistive technology on an innovative chair for children like Ted.