A Burgess Hill family are raising funds to provide their disabled daughter with an adventure garden.
At four months old, Elexia Joy was admitted to hospital as she was having about 15 seizures a day. Her parents were given the devastating news that she had an unknown form of epilepsy and infantile spasms, and she was put on medication to help reduce her seizures. Elexia, also known as Lexi, also has an unknown condition that presents with her being non verbal, and she cannot walk without aid.
Today, Lexi is six years old, and her seizures are less frequent – around two to three times a week – but much longer, all lasting for more than seven minutes.
Parents Kyle and Jay Joy are raising funds to create a suitable and safe outside environment for their daughter to play. Their plan is to install a two-metre fence around their plot to isolate the dangers of the nearby road. Fresh turf would be placed in the garden, and then a pit would be dug to house a small pool. Lexi loves to swim, and has hydrotherapy sessions which held develop her skills.
Other plans include a small trampoline and a swing climbing set for the future, for if Lexi can ever walk without assistance. The Joys have a small base extension to their house, which they hope to convert to a untility room and a wet room.
Kyle said: “My wife Jay is Lexi’s carer so I am the only person that works. The extension is just a bare base and not anywhere close to finishing. With the little savings we have each month maybe in the next ten years it will be finished – it’s difficult to pay for all bills on a single wage and have money left over.”
“Lexi is in a fantastic specialist school called Woodlands Meed, this does give my wife some respite in the day. Our life is very difficult and isolated, it’s difficult to integrate into modern society with a child with special needs. You tend to get left behind and it’s near impossible to mingle with families with a typical children.
“Although me and my wife very rarely get any alone time Lexi does get the best quality of life we can give her. Lexi is getting heavier as she grows and my health is not great as I have a lower back condition that I have to manage with medication, plus Jay’s back is getting bad with all the lifting she has to do with Lexi.
“We love Lexi so much and she is generally a super happy child. She has a smile that would light up a room.”
Help support the project by visiting www.gofundme.com/f/1qz0jt8mk0.