Imagine turning the tap on and dislocating your shoulder, or your kneecap popping out as you try to get dressed in the morning.
That’s the life of 12-year-old Maggie-May, who has a ‘connective tissue disorder’ which means even the smallest knock or unplanned movement can dislocate her joints, sometimes several times a day. Aside from the pain and anguish it causes, it makes living the normal life most of us take for granted almost impossible.
More than anything, that ‘normality’ is what her parents, Leonie Thomas-Barber and her husband Dan, want for their brave daughter. Now they’re one step nearer thanks to the donation of a life-changing Acorn Stairlift for their home in the Port Tennant suburb of Swansea.
While Maggie-May can manage the stairs with some help on a very good day, on most days they’re simply out of the question. Her condition leaves her in too much pain or too tired, which makes her more prone to sudden dislocations. Having a fall on the stairs could be catastrophic.
It’s meant for the past few months she’s had to sleep downstairs on a pull-out bed, while mum Leonie sleeps nearby on the sofa in case Maggie-May needs her in the night. The only alternative is for her to go to bed in the early evening, before she gets too tired to face climbing the stairs. There have also been times when she’s been stranded in her bedroom, unable to make it downstairs.
The solution was a stairlift, so Leonie started seeking quotes to find out if the family could afford it. Then came some good news after she contacted Acorn Stairlifts. We were so moved by Maggie-May’s story and her courage that we wanted to literally give her life a lift.
“Acorn’s surveyor came out to measure the stairs and give us a quote, but the next day we got a call from Gareth at the company to say they’d fit the stairlift for free,” said Leonie. “We just couldn’t believe it, and I cried… a lot!”
Leonie explained that Maggie-May was born with the condition, but it only became pronounced as she grew: “When she was little she would say she was in pain, especially if she had a knock, but we just thought she was being a bit dramatic. It was only when she got a bit older we realised something was wrong.”
Although her ‘hypermobile’ joints will never go away, the condition will hopefully stabilise once she’s fully grown, but the next few years through her teens could be challenging.
“She copes remarkably well,” said Leonie. “When her fingers dislocate or if her patella (kneecap) pops off, she can usually put them back herself, but if her shoulder comes out I have to help her get it back in. Her joints can even slip out just turning over in bed at night and she has quite a bit of pain in her hips. More than anything it just leaves her really tired and weak.
“If Maggie-May was going to use the stairs we had to plan so she could do it before she got too tired, but over the past 18 months it’s become really difficult. The stairlift is already such a huge help. It means we can both move back into our bedrooms and she can go up and downstairs whenever she likes, without having to plan or get worried she won’t make it.
“It’s one step on the road to normality, but it’s a big step. Now the huge hurdle of the stairs is out of the way I feel like we can start to build up Maggie-May physically and emotionally for other steps, like getting back to school on a more regular basis. She’s absolutely delighted with the lift and it’s making her life so much easier. Her house is now her home again.”
Gareth Deegan, from Acorn, said: “When we heard Maggie-May’s story from our surveyor we were so impressed by her bravery that we wanted to do all we could to help. Having your own space is important for a teenager so we hope the stairlift will give Maggie-May her own bedroom back and help improve her quality of life.”
Maggie-May is pictured trying out her new Acorn Stairlift with installer Wayne Butler.