RUPERT’S RALLY: St Albans family aims to raise awareness of condition which almost took their baby’s life

A St Albans family is hoping to raise vital funds to raise awareness of a genetic neuromuscular condition which almost took their baby’s life. 

George and Charlie Mosey want to make more parents aware of spinal muscular atrophy (SMA) so earlier screenings for the rare condition take place. 

Their son, Rupert, was just eight weeks old when he was diagnosed with SMA and despite initially being told he would only live for another seven months he has gone on to thrive thanks to a £1.8m treatment. 

Rupert was given gene therapy treatment, Zolegensma, just three weeks after his diagnoses and he has since gone from strength to strength and is now 11 months old. 

The Moseys are now campaigning to increase awareness of spinal muscular atrophy and raise funds for the charity SMA UK, Great Ormond Street Hospital and a charity called Sapre in Italy. 

Speaking to StAlbansNews, Rupert’s mum Charlie spoke about why they decided to start a GoFundMe page, said: “We just wanted to fundraise for others, Zolegensma saved his life, he wouldn’t be here without it. 

“It’s also the physio and everything else that is making his life.

“George and I really want to make it a positive experience and have a different mindset then we did a few months ago.

“This has been a life changing experience and we have been trying to find the positives and joy from it.”

Since being infused with Zolgensma Rupert has undergone daily physio and now has increased control of his head, greater range of movements of his limbs and is learning to stand. 

George and Charlie have also planned several fundraisers including a half marathon, an 100-mile walk along the South Down Way and a sponsored skydive.

Charlie said: “He is and will continue to fight his condition every day, and will undoubtedly be faced with challenges for the rest of his life.  But by raising funds and awareness, we hope we can make his life, and so many like Rupert, better, through more research, support and treatments.”

To donate visit www.gofund.me/7b242b8c  or for more visit @rallyroundrupert on Instagram.