A SEVEN-year-old boy from west Belfast, who suffers from a rare form of muscular dystrophy, is at the centre of a new fundraising campaign which is aiming to buy him a stair lift for his home.
Eli Hicks falls between 30 and 40 times a day due to his condition.
Concerns about the P3 pupil at St Teresa's PS were raised when he was 18 months. However, he and his family didn't receive an official diagnosis until he was around six, such was the length of the process.
As a result of his condition, the schoolboy only has 25 per cent of the muscle mass of other children his age. He also suffers from extreme exhaustion and finds it hard to put on weight.
He must also wear a leg splint for eight hours a day and while in school and out with his family, he uses a wheelchair. As he can't manage stairs, it falls to his parents Louise (37) and Brian (41) to carry him to bed at night. However, as both parents have recently undergone surgery, this is becoming increasingly difficult.
In a bid to help the family, supporters from The Unit, a gym in west Belfast where Brian attends, have stepped forward to volunteer, along with other family and friends and strangers, to run the Belfast Marathon in April. As well as a number of supporters running the entire marathon, there will also be several relay teams as well as an eight-mile walk. All the funds raised will go towards the £5,000 needed for the stair lift for Eli, who also has a five-year-old sister, Esha, who has Down's Syndrome.
So far, on a JustGiving fundraising page online, £2,900 has been raised.
Speaking to The Irish News, Louise said her son needs "a lot of help" at home.
"He always needs picked up. He can't manage stairs at all. We have to carry him upstairs. We are quite happy plodding along but it's getting harder and harder to get him up the stairs. I have a really bad back, I had surgery and Brian has a chronic illness," she said.
The mother-of-two said despite his condition, Eli is just "high on life".
"Life excites him. He is the happiest wee kid. He tries to run and jump and climb. We are willing to do everything it takes to support him," she said.
The full time carer said the family are "delighted" that the team from The Unit have volunteered to help Eli.
"It's really humbling for us", she said.
Louise said a stair lift would help give Eli "that little bit of independence, where he can go to his room and play or relax away from the bustle of the house. it will give him a little retreat.
"It will help us greatly as a family."
:: Donations can be made at https://www.justgiving.com/crowdfunding/The-unit-5?.
