St Albans boy given months to live set to start school

Charlie and George Mosey have raised over £250,000 in two years for charity 'Rally Round Rupert', set up in aid of their son.

Rupert and mum Charlie (Image: Charlie Mosey) Rupert, now three, was born in 2021 and diagnosed with the most severe form of spinal muscular atrophy (SMA), a rare genetic condition that causes extremely weakened muscles.

Miracle drug Zolgensma saved his life, but the challenges of living with the condition persist.

The charity has two objectives - to raise awareness of SMA and fund clinical trials.

Two weeks ago, 99 walkers set out across the Cotswolds to undertake a gruelling 100-mile hike to raise money for SMA research.

Over £100,000 was raised (Image: Charlie Mosey)

Over £100,000 was raised and is now being used to work on a physio clinical trial at the University of Oxford, aimed at providing SMA children with the right equipment at home and arming parents with knowledge on how to support them in day-to-day life.

Charlie describes the charity as a "passion project" for her and her husband, saying: "It's all because of Rupert, he is absolutely incredible.

"We never imagined he'd be able to go to school but he's an incredibly courageous and determined little boy.

"We believe there is real light at the end of the tunnel for children with SMA and the charity is making real headway in making that a reality for them and their families."

Last year, Rupert became an older brother to ten-month-old Wilf and began learning to walk in March

Rupert was diagnosed with SMA in 2021 (Image: Charlie Mosey)

Despite the incredible progress made, Charlie says that her eyes have been opened to just how hard things are people with disabilities, lamenting the lack of accessibility in public spaces.

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She said: "The idea of people being able to have independence regardless of ability is just not possible at the moment, and I've particularly noticed it in and around St Albans."

The mum-of-two explained that Rupert struggles to get his wheelchair to their local park due to the kerbs, so ends up having to drive his chair in roads.

Charlie added that she didn't believe disabilities were being taken into account in planning projects, saying: "I doubt that these plans have ever been looked at by someone in a wheelchair."

The charity will continue to raise money for Rupert and others like him. You can follow Rupert's journey on Instagram @rallyroundrupert.