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Not all superheroes wear capes, some don tiaras and do the good work such as five-year-old Rosie. After befriending Sid at a birthday party and learning he uses a wheelchair due to having spinal muscular atrophy type 1 (SMA1), a condition which causes muscle weakness and a lack of motor neuron function in infants, she wanted to help.Rosie set herself a challenge, to scoot four miles in her favourite princess dress and so far, she has raised over £4,000, all to help her friend.Rosie's mother, Michelle, said Rosie was curious about Sid's condition and became "quite emotional" when she learned of some of the difficulties he faced. "Sid is a wheelchair-user and Rosie had questions around that," Michelle said to the BBC. The mother said she explained to Rosie about SMA1 and how Sid's parents had been raising funds to make their home more accessible.
"Rosie wanted to raise money to help Sid. I initially struggled to think what she could do, given she's only five," she added.In the end, it was decided that Rosie would take on a 6.8 km (4.2 mile) scooter challenge, completing a lap of Leybourne Lakes Country Park in her favourite princess dress. "She's never been all the way round the park before, but we're confident she could do it," Michelle said."Every penny gets Sid closer to the house adaptations he and his family so desperately need," Michelle said.
A date for the scooter challenge has not yet been set, due to weather conditions.According to the charity Tree of Hope, Sid was treated with the £1.8m single dose of gene therapy Zolgensma. There is still no cure for SMA, but medications and therapies can help manage the condition.Sid's mum Sophie said they needed a through-floor lift, which requires an extension including an accessible bedroom and bathroom. "He's big for his age and, with low muscle tone, it's unsafe to carry him, especially on the stairs," the 37-year-old said.
"Last year he broke his arm falling off the toilet, so we're desperate to make our home accessible."The entire work, she said, would cost £138,000. She added that she was "grateful" for every donation and especially thankful to Rosie's "incredibly thoughtful" support. The family is being supported by Tree of Hope, which helps families navigate their child's healthcare journey by offering a fundraising service. "We're really pleased to be supporting Sid's family as they raise funds for the home adaptations he needs," said chief executive Becky Andrew.
