Grayce Pearson was just 14 months when she was diagnosed with spinal muscular atrophy and now her parents, Carrie and Tony, face a £7,000 bill to make changes to their home.
The parents of a young Glasgow girl who lives with a rare degenerative muscular condition are facing a £7,000 bill to improve their home. Grayce Pearson, from Milton , was just 14 months when she was diagnosed with spinal muscular atrophy after her parents Carrie and Tony noticed she stopped being able to move her legs and began losing her strength.
After eventually being referred to specialists, Grayce received the diagnosis, which affects just three to four babies in Scotland every year. Symptoms include muscle weakness, movement issues, and problems with breathing or swallowing. Tony, 36, says he and his wife Carrie, 34, feared the worst when they first received the devastating diagnosis. He told Glasgow Live: 'The doctors phoned saying both of us needed to go into the hospital and our hairs raised.
We were taken into a small room with consultants, and they said our daughter had SMA.
'The first question my wife asked was 'is my daughter going to die? ' and it made me cry. They told us there is treatment to keep her alive, but if there wasn't she would die, and that terrified us.
'Physically, all she can do is sit. She can't crawl, stand, or bear weight on her own, 'Since January, she's been admitted to hospital five times due to bugs - her immune system is not the greatest. If the SMA had been picked up when she was born she'd be walking now.
' Since her diagnosis, Tony and Carrie have campaigned tirelessly for more testing for the condition, with early diagnosis and treatment crucial for a better outcome. Earlier this year, Scotland became the first country in the UK to test for the condition - which was in part thanks to their efforts. Tony previously described the test as a 'history' for Scotland. He told the Press Association: 'History being made in Scotland.
'It's £4 to test a baby for SMA. Is a child's life worth £4? Definitely. It's a gamechanger.
' Grayce is now three and uses a wheelchair, and her parents needs to carry out major improvement works to their home as she grows and becomes more independent. However, despite reaching out to a number of authorities, organisation, and charities, they have not had access to any financial support, meaning they need to fork out £7,000 to install a ramp outside their home and a stair lift inside, or else face an eight-10 year wait for home improvements.
Tony added: 'Nobody has been able to help us, and she's getting bigger.
'We're going through IVF for another baby, so this doesn't happen again, but I'm left thinking how is my wife going to get two children out the house? 'To buy time, we've needed to install the ramp and stairlift. 'Even now, our toilet isn't the biggest, and her wheelchair can only just spin in it. When she's older she won't be able to use the toilet or get in the bath herself.
'My wife now has a condition with her spine as she needs to keep carrying her. If we can't improve the house, how is Grayce going to get out the house by herself?
' Now, a GoFundMe has been set up to help the family out. After meeting Kirsty and David of Brave Ginger - a mental health clothing company based in Clydebank - during the Glasgow Kiltwalk, they were inspired to help out the family, and started up a fundraiser to help pay for the improvements. So far, more than £2,600 has been raised, with a target set at £4,000. Tony said: 'Amazingly, people have donated.
Nobody has just £7,000 lying about.
'Grayce is a social butterfly, she always says hi to people. She's the happiest little girl you'd ever meet in your life. ' You can donate to the fundraiser online here .
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