A Small Lift, A Huge Impact – Help Leo Keep His Independence
An Arklow mother has set up a fundraiser to help ensure her son will retain his independence. From sitting down with Susan Dixon, Leo’s mum, it’s clear that this is a family doing everything they can to ensure their 12-year-old son keeps the independence he deserves. But right now, they’re facing an uphill battle.
“Leo is a bright, funny young man. His confidence shines, and he’s just like any other 12-year-old. He wants to play his games, lounge on his bed in the afternoon, and have the freedom to move around his own home,” Susan tells me.
But for Leo, that freedom has become increasingly limited. He was born with an extremely rare form of Congenital Muscular Dystrophy. So rare that he is the only person in the world with his unique variation of Bethlem Myopathy Muscular Dystrophy Col6a2.
Muscular dystrophy is a progressive muscle-wasting disease, and though the family knew challenges lay ahead, Leo’s condition has advanced much faster than they expected.
“He’s now a full-time wheelchair user, and he can’t climb stairs anymore,” Susan explains.
Their home, a two-story house, was never built with this in mind.
“We have plans to extend and adapt the house, but these things take time, and Leo doesn’t have time to wait. Right now, we have no choice but to carry him up 14 steps to his bedroom every night.”
“It’s not sustainable. If Leo’s dad isn’t there, he simply can’t get to bed. If he wants to take a break in his room during the day, he has to wait for someone to carry him.
The family has been doing everything possible to secure grants for home adaptations, but they’ve hit a frustrating roadblock.
“Stairlifts for children aren’t covered under adaptation grants. If we fight for one, it could hurt our application for the bigger house adaptations we desperately need.”
After exhausting every avenue, the only option left is to turn to their community for help.
“Leo needs a stairlift, and we need help raising the funds for it. A local company has already stepped up, offering to kick-start the fundraising effort. Now, it’s about rallying enough support to make this a reality.”
Despite everything, Leo’s spirit remains strong. He’s determined, full of personality, and wants nothing more than to live life on his own terms.
“We just want Leo to always have his independence,” Susan says. And with the right support, that independence is within reach.
The family is asking for donations, big or small, to help fund a stairlift for Leo. If you’d like to contribute, you can do so on the GoFundMe Page https://www.gofundme.com/f/lets-give-leo-a-lift?qid=7e963c6a84b0ce0aff0830fe4ced5bc5
