Family of an Eastbourne nine-year-old who can no longer walk due to muscle condition share their story
The family of a nine-year-old Eastbourne boy who has lost the ability to walk due to a muscle condition have shared their story in a bid to raise awareness for Chestnut Tree House’s new charity event.
The brand new Wonder Walk comes to Eastbourne this summer, and it aims to raise vital funds for local children with life-shortening conditions and their families. Families like the Greenhills, who live in Eastbourne.
Nine-year-old Oliver is supported by Chestnut Tree House. He and his family receive monthly visits from the hospice’s Community Team, something they say has made a real difference to them, and they also spend time at the purpose-built hospice building near Arundel.
When he was about 18-months-old, Oliver was diagnosed with a condition that means his muscles will deteriorate over time and leave him reliant on his parents for all of his personal care.
In a lot of ways he is like every other nine-year-old - attending the local primary school, winding his siblings up and playing on his PlayStation at every opportunity. But 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.
Caroline, Oliver’s mum, said, “It’s devastating.
“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 following his diagnosis Oliver’s family had very little support.
Caroline added, “Nobody can look after Oliver.
“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 seven-years-old. After an initial visit from a nurse they were introduced to Susan, Oliver’s care support worker.
Caroline said, “We were really worried about Susan looking after Oliver to start with.
“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.
Caroline said, “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.
Caroline said, “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.”
All of Chestnut Tree House’s care is offered free of charge, and it receives less than six per cent of its funding from central government.
This means that they rely on fundraising events like the Wonder Walk to enable them to continue offering care to families like Oliver’s.
Taking place on June 15, from the Redoubt Fortress in Eastbourne, the 10-mile Wonder Walk is set to offer a unique experience.
Setting off at 7pm, participants will walk from day to night, reflecting the 24-hour nature of the care Chestnut Tree House offers to local children and families.
Three interactive stops along the route will give walkers the chance to experience first-hand some of the fun that children and families have when they are cared for by Chestnut Tree House. The walk will then finish back at the Redoubt, where walkers can celebrate their achievement in style
The Wonder Walk is open to everyone aged 10 and over (anyone aged under 16 will need to be accompanied by an adult) and earlybird registration (before 15 April) costs £15 per person. Find out more and register at www.chestnut-tree-house.org.uk/wonderwalk