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For 8 year old Oliver Now is about experiencing the freedom of going out without his parents. Of doing things that other 8 year olds do, and gaining some independence.
Oliver lives in Eastbourne with his Mum Caroline, Dad John and siblings Joshua, Connor and Shannon. In a lot of ways he is like every other 8 year old – attending the local primary school, winding his siblings up and playing on his PlayStation at every opportunity. When he was about 18 months old, however, he received a life-changing diagnosis that means he is confined to a wheelchair and is reliant on his parents for much of his personal care.
Mum Caroline explains: “We knew something wasn’t right when he didn’t hit his milestones. Other babies his age were holding their own heads up, sitting, crawling. But Oliver just laid on his back all the time and kept shaking. It was on our 6th visit to the doctors that I insisted on a referral and we started to get some answers.”
After a further referral to a London hospital, who did some genetic testing, Oliver was diagnosed with Spinal Muscular Atrophy (SMA). It is a condition that affects the motor neurons, which are essential for muscle strength and movement, meaning that Oliver’s muscles will deteriorate over time. He has already lost the ability to walk, and even to move his legs very much, he may lose the ability to swallow, and will probably need oxygen at night in the future.
“It was devastating,” says Caroline. “We’ve had to come to terms with the fact that he is never going to get better, he is just going to deteriorate.”
For several years the family had very little support. “Nobody can look after Oliver,” says Caroline. “We can’t just ask a friend to babysit and go out for dinner, we can’t leave him at a birthday party for a couple of hours or let him stay at his grandparents’ overnight because they can’t get him out of his chair.”
The family were referred to Chestnut Tree House in 2017, when Oliver was 7 years old. After an initial visit from a nurse they were introduced to Susan, Oliver’s Care Support Worker. “We were really worried about Susan looking after Oliver to start with,” says Caroline. “He has always been quite clingy so we didn’t know if he would even let us leave him with her. But he was fine, and now absolutely loves his visits with her. They always go out and have fun – at the bowling alley, or driving range, or just a trip to feed the ducks at the local park. And it’s made a real difference to his confidence – when he was a baby I couldn’t leave without him getting hysterical, now he’s almost too independent, which is really great.
“Oliver has always missed out on things. Little things, like bouncy castles and swings at the park, and big things like trips to theme parks, and it can make him really frustrated. Chestnut Tree House has given him the chance to do things – speedboat trips, trips to Knockhatch, swimming in the hydrotherapy pool to name a few – and it really has made a difference.”
Oliver’s sister, Shannon, has also benefitted. “Because Oliver can’t join in, or because there aren’t always the facilities to let us take care of his needs with dignity, we tend to avoid certain places meaning that Shannon misses out too. She has been on some of the Siblings Days organised by Chestnut Tree House, giving her the chance to do some really fun things. It’s also given her the chance to feel special, and to meet other kids with disabled siblings.”
As well as support at home the family have visited Chestnut Tree House’s purpose built hospice near Arundel. “There is such a loving atmosphere at the House,” says Caroline. “The first time we stayed overnight I thought we would be called on to help with Oliver’s care, but the team at the house just got on with it. It was weird not to be needed, but lovely to have a full night’s sleep in the family rooms upstairs.
“For Oliver, Chestnut Tree House really is the chance to get away from us and have fun. And for us, it’s knowing that he can have that fun whilst having all of his needs taken care of.”