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