At just six weeks old Ted Chadwick was diagnosed with spinal muscular atrophy. READ MORE:Parents of a baby boy with a rare muscle-wasting disease are desperately fighting to raise money for a miracle drug to keep their son alive.Then, when he was just six weeks old, his parents learnt these were symptoms of condition called spinal muscular atrophy type one .
Ted Chadwick , now eight months old, had trouble sleeping and feeding shortly after he was born. Then, at just six weeks old, his parents learnt these were symptoms of condition called spinal muscular atrophy type one Recalling Ted's ordeal, his mother Daniela Marinova told MailOnline: 'I felt guilty, as if something we had done caused this.
It increases levels of a protein needed to keep spinal cord motor neurons — vital nerve cells that send instructions to muscles — alive. Ms Marinova, who welcomed Ted with her partner Louis Chadwick in July 2023 after a two year long battle to conceive via IVF, said they initially assumed his issues with feeding and sleeping were typical for a newborn.
'I didn't know what SMA was — I thought it was the children's milk formula — but when I saw information on the disease, my world hit the floor. We were beside ourselves.'The fault causes spinal cord motor neurons to gradually deteriorate, impairing both voluntary movements like lifting an arm and involuntary movements like breathing.As sufferers cannot cough properly, mucus can build up in the airways leading to recurrent infections.
There is no routine NHS screening system to pick up newborns with SMA, which affects around 70 children every year in the UK and 400 in the US. The one-off infusion, given in just an hour, uses a harmless virus to deliver a healthy version of the SMN1 gene. 'But there's little-to-no research on the lasting effects of this on children since all medication for SMA is relatively new.'
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