Girl, 5, scoots for friend with rare condition

10 hours ago

Hsin-Yi LoSouth East

Rosie is raising money to support her friend, Sid, who lives with spinal muscular atrophy

Handout A five-year-old girl in a blue long dress and purple shoes. She is riding her scooter near a park. — Rosie is raising money to support her friend, Sid, who lives with spinal muscular atrophy

A five-year-old girl is taking on a scooter challenge to raise money to support her friend who lives with a rare genetic condition.

Rosie, from Snodland in Kent, first met Sid, also five, at a birthday party.

Sid has spinal muscular atrophy type 1 (SMA1), a condition which has symptoms that can include muscle weakness and mobility problems, according to the NHS.

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.

Michelle 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," Michelle added.

In the end, it was decided Rosie could take on a 6.8km (4.2-mile) scooter challenge, completing a lap of Leybourne Lakes Country Park in her favourite princess dress.

Rosie's mother, Michelle, said their daughter has raised more than £3,000 so far

Handout A five-year-old girl in a long blue dress and purple shoes. She is standing with her arms outstretched near her scooter, at a park. — Rosie's mother, Michelle, said their daughter has raised more than £3,000 so far

"She's never been all the way round the park before, but we're confident she could do it," Michelle said.

She said Rosie had so far raised more than £3,400, surpassing her target of £2,000.

"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.

'Incredibly thoughtful'

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."

She said the work would cost £138,000.

Sophie, from Yalding in Kent, said 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.

Chief executive Becky Andrew said: 'We're really pleased to be supporting Sid's family as they raise funds for the home adaptations he needs."

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