A Bexhill College student, who has received care from a children’s hospice for the past three years, is encouraging women to pull on their walking shoes in aid of the cause.
Eighteen-year-old Jordan Wright has spoken about the care he receives at Chestnut Tree in the hope that it will encourage more people to support this vital local charity by signing up to their Night to Remember midnight walk.
Jordan, who lives in St Leonards and attends Bexhill College, has Duchenne Muscular Dystrophy, a progressive condition that causes muscle degeneration and affects about 1 in 3,500 boys in the UK.
He and his family, sister Aimee and mum Sarah, have been cared for by Chestnut Tree for the past three years.
Jordan was just three-and-a-half when he was diagnosed with Duchennes.
Mum Sarah said: “I knew something was up so the diagnosis was a relief in a lot of ways.
“To start with Jordan required physiotherapy and hydrotherapy to help him to do the things other kids his age was doing, but over time his physical ability has decreased, whilst his needs have increased and become more complex.”
Jordan lost the ability to walk at the age of eight and has now lost most of the movement in his arms.
This means he is totally reliant on a wheelchair to get around, he can’t feed himself and needs help to use the toilet.
Sarah added: “Whilst Jordan likes to be as independent as possible, the reality is that he needs somebody to be with him all the time.
“And as Jordan is now a strapping 18-year-old, it often takes two people to lift and move him.”
The family was first put in touch with Chestnut Tree in 2011 and visit often.
Jordan said: “I like to be outside as much as I can so I tend to spend my time at Chestnut Tree House going for walks along the lanes or hanging out in the garden”.
“If it’s raining then I’ll hang out indoors, chatting to the staff or playing board games with them. I also enjoy the hydrotherapy pool as I don’t get the chance to swim outside of a hospice.”
When asked what the house means to him, Jordan said: “Freedom. It’s my break away from home, away from mum and the rest of the family, and a chance to totally relax because I know the nurses will do everything for me.”
Sarah added: “When Jordan goes to Chestnut Tree House it’s my chance to take a proper break. I can have a lie in, read some books and not worry about what time the next carer is coming or if Jordan needs something. I have nobody who can take over caring for Jordan 24/7 and Chestnut Tree provides that.”
Now in its sixth year, Night To Remember will take place at midnight on Saturday May 16 in Eastbourne, with a choice of four-mile and 10-mile routes.
Entry is open to women aged 16 and over with a discounted entry fee of £15 if you register before March 15.
For more information, visit nighttoremember.org.uk/cth.