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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.
Ted Chadwick, now eight months old, had trouble sleeping and feeding shortly after he was born.
Then, when he was just six weeks old, his parents learnt these were symptoms of condition called spinal muscular atrophy type one (SMA1).
This is the most severe form of a neuromuscular condition which sees the spinal cord motor neurons, cells critical to governing how we move, gradually deteriorate, impairing movement.
Ted has already undergone a life-changing gene therapy which medics believe has prolonged his life expectancy past his second birthday.
However, the tot from London, still struggles to hold his head up or even swallow food. His family hope the drug, Risdiplam, will help preserve his strength.
Ted Chadwick (pictured), 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 (SMA1)
Ted has already undergone a life-changing gene therapy which medics believe has prolonged his life expectancy past his second birthday. Pictured, Ted with his mother Daniela Marinova and father Louis Chadwick in Greece
The tot from London , still struggles to hold his head up or even swallow food. His family hope the drug, Risdiplam, will help preserve his strength. Risdiplam, sold under the brand name Evrysdi, was the first oral medication approved by the NHS to treat SMA1. Taken daily, the syrup can be given within days of birth and has been shown in studies to slow the march of the condition and, in some cases, even reverse it
But Ted, who underwent the gene therapy in Bulgaria, is still too unwell to return to the UK and access the drug at home.
Recalling Ted's ordeal, his mother Daniela Marinova told MailOnline: 'I felt guilty, as if something we had done caused this.
'It's been a rollercoaster of emotions and although we have a wonderful baby boy, who is intelligent, funny and very loving, we're finding it hard as a family to have any normality.
'Initially, we didn't think we had much time left and it felt like we were in the mourning process for someone who is still here.
'But now we've been given hope due to a one-time treatment option — but it comes at a price.'
Risdiplam, sold under the brand name Evrysdi, was the first oral medication approved by the NHS to treat SMA1.
Taken daily, the syrup can be given within days of birth and has been shown in studies to slow the march of the condition and, in some cases, even reverse it.
It increases levels of a protein needed to keep spinal cord motor neurons — vital nerve cells that send instructions to muscles — alive.
Unlike spinraza, another treatment for the condition that is injected into the spine every four months, risdiplam can be easily taken at home. But it has a list price of nearly £8,000 ($10,000) per dose.
While the risdiplam is available on the NHS, as Ted was born in Bulgaria and hasn't been able to travel back to the UK, he isn't registered with the NHS.
This leaves the family trapped, they cannot travel until Ted is well enough but face a huge bill for his treatment while overseas.
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.
But during a trip to Corfu in Greece in August 2023 to visit Mr
