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Tot who 'would survive just seven months' is turning three and learning to walk

2024-03-15 80 Dailymotion

A little boy born with a severe muscle condition who doctors said would survive just seven months is turning three - and now learning to walk.<br /><br />Rupert Mosey, two, developed spinal muscular atrophy (SMA) soon after birth - a condition causing muscle degeneration.<br /><br />Doctors warned his parents, Charlie Mosey, 36, and her husband, George, 39, that the tot wouldn't live past seven months old.<br /><br />But at three months old he had a miracle gene therapy drug Zolgensma - which dramatically reduced his muscle wastage.<br /><br />Five months later he was enrolled on a clinical trial for a SMA treatment in Milan, Italy.<br /><br />Doctors even made a special allowance for him to continue accessing the drug in the UK after the trial ended - due to his progress.<br /><br />He was the first child with SMA to have the treatment, Spinraza, after having had Zolgensma, outside of a clinical trial and on the basis he's progressing well.<br /><br />Charlie and George spend hours every day doing physical therapy with Rupert to help build his muscle strength - and it's paying off.<br /><br />Incredibly, the tot has defied the odds to turn three this month and is even now learning to walk unaided.<br /><br />Charlie, VP of customer success for a tech company, from St Albans, Hertfordshire, said: "When Rupert was four or five weeks old he stopped moving.<br /><br />"He was given seven months to live - and researching SMA as his parent was so traumatising.<br /><br />"But after the gene therapy, we realised there could be hope.<br /><br />"We got him on the clinical trial and then he was approved to continue it in the UK because of how much he was progressing.<br /><br />"But even with the treatments, it's all about trying to maintain as much of his mobility as possible.<br /><br />"It's like he is training for the Paralympics because he exercises so hard each day.<br /><br />"He is so willful and determined and courageous - we're so proud of him.<br /><br />"We were told he wouldn't even be here for his third birthday - but he is, and he's thriving."<br /><br />Rupert was born on March 29, 2021 and was seemingly healthy.<br /><br />But after a fortnight he seemed to be getting physically weaker and by six weeks Charlie said he was "like a potato".<br /><br />His GP wasn't concerned but Rupert's parents saw him "deteriorating fast" and got increasingly worried when the tot stopped eating too.<br /><br />On May 19, 2021, Rupert's breathing became shallow "like he had given up" - and the tot was rushed to hospital.<br /><br />Luckily he was stabilised, but blood tests that followed confirmed he had SMA.<br /><br />He had type one - the most severe form - which meant all of his muscles would waste over time.<br /><br />Charlie said: "Before we found out more about the condition, we thought it just affected physical mobility.<br /><br />"We didn't know that with muscle wastage the muscles around his lungs, heart, and bowels would deteriorate too.<br /><br />"Doctors told us to get as many of the family to meet him as possible, because he wouldn't live past seven months old."

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