‘I have less than a year left with my baby and I’m exhausted from grieving – but miracle drug will give us more time together as a family’

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Written By Rivera Claudia

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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

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

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.’

WHAT TO KNOW ABOUT SPINAL MUSCULAR ATROPHY, THE NUMBER ONE GENETIC CAUSE OF DEATHS FOR INFANTS

Spinal Muscular Atrophy (SMA) is a disease that weakens a patient’s strength by affecting the motor nerve cells in the spinal cord.

Those affected never gain the ability to walk, eat or breathe.

SMA is the number one genetic cause of death for infants.

It is genetic and passed from parent to child.

There are four primary types of SMA—I, II, III and IV, which are based on age of onset and the physical milestones achieved.

Type I

  • Onset is shortly after birth
  • Weakness
  • Difficulty breathing, sucking and swallowing
  • Never reach the developmental milestone of being able to sit on their own
  • Children with type 1 SMA can survive for a number of years   

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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 Chadwick’s parents, Ted developed red blotches over his body and became ‘limp’. 

Ms Marinova, 44, said: ‘I went to school in Greece, so I picked up from the doctors that they were worried about neuromuscular diseases and I hoped that this was a mistake.

‘But the realisation started setting in as no other tests were showing problems and then a genetic testing confirmed his condition.

‘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.’

Spinal muscular atrophy is caused by a fault in a gene called SMN1. 

The fault causes spinal cord motor neurons to gradually deteriorate, impairing both voluntary movements like lifting an arm and involuntary movements like breathing.

Symptoms include floppy limbs, and difficulties sitting up, crawling, breathing and swallowing. 

As sufferers cannot cough properly, mucus can build up in the airways leading to recurrent infections.

Older children may also develop bone problems, including scoliosis, when the spine twists and curves to the side. 

Ms Marinova said she and Ted's father Mr Chadwick initially assumed his issues with feeding and sleeping were typical for a newborn. But during a trip to Corfu in August 2023 to visit Mr Chadwick's parents, Ted developed red blotches over his body and became 'limp'. Pictured, Ted after developing the rashes

Ms Marinova said she and Ted’s father Mr Chadwick initially assumed his issues with feeding and sleeping were typical for a newborn. But during a trip to Corfu in August 2023 to visit Mr Chadwick’s parents, Ted developed red blotches over his body and became ‘limp’. Pictured, Ted after developing the rashes 

Determined to give Ted the best possible chance in life, his parents researched the different forms of therapy available immediately after his diagnosis. And in October, they flew to Bulgaria so Ted could undergo the gene therapy Zolgensma for free on the country's healthcare system

Determined to give Ted the best possible chance in life, his parents researched the different forms of therapy available immediately after his diagnosis. And in October, they flew to Bulgaria so Ted could undergo the gene therapy Zolgensma for free on the country’s healthcare system

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. 

Because most babies don’t show clear symptoms for several weeks or months, experts fear many continue to slip through the cracks. 

Campaigners have long urged ministers to back plans to test babies at birth. 

Determined to give Ted the best possible chance in life, his parents researched the different forms of therapy available immediately after his diagnosis. 

And in October, they flew to back to Bulgaria so Ted could undergo the gene therapy Zolgensma for free on the country’s healthcare system.

Zolgensma has been proven in studies to help sufferers sit, crawl and walk — something they would never normally be able to do — and also prevents them from being put on a ventilator.

The one-off infusion, given in just an hour, uses a harmless virus to deliver a healthy version of the SMN1 gene.

It passes into the nerve cells to replace the defective gene and restores normal function, allowing the baby to live a healthy life with minimal symptoms.

‘His life expectancy has now increased to over two years – but to what extent past this, we don’t know’, Ms Marinova told MailOnline.

‘He has difficulty with movement and it’s unlikely he’ll hit any milestones without more medical intervention.

‘But there’s little-to-no research on the lasting effects of this on children since all medication for SMA is relatively new.’

Zolgensma, which made headlines in 2021 when it became the most expensive approved drug in the world, is a genetic therapy. With one injection, it permanently replaces the faulty SMN1 gene with a functional one

Zolgensma, which made headlines in 2021 when it became the most expensive approved drug in the world, is a genetic therapy. With one injection, it permanently replaces the faulty SMN1 gene with a functional one

In a bid to preserve Ted's strength and prolong his life, they are raising cash for Risdiplam. A GoFundMe has been launched to help cover the cost of the life-preserving treatment, raising over £30,000 since December

In a bid to preserve Ted’s strength and prolong his life, they are raising cash for Risdiplam. A GoFundMe has been launched to help cover the cost of the life-preserving treatment, raising over £30,000 since December

She added: ‘Ted is currently going through physiotherapy and there’s been some improvement, but nothing permanent.

‘He is very weak and struggles to hold up his head, as well as swallowing solid food.

‘But he’s getting better each day.’

In a bid to preserve his strength and prolong his life, they are raising cash for Risdiplam.

They have launched a GoFundMe to help raise cover the cost of the life-preserving treatment, raising over £30,000 since December. 

‘Due to the cost, the £30,000 would only see us for around three months’ supply and he needs this for life,’ Ms Marinova said. 

‘The money raised is also going towards therapeutic aids and physiotherapy.

‘Although the fundraising is great, we haven’t touched the sides of his needs going forward. 

‘We have self-funded some bottles until then, but we cannot support this any longer.’

She added: ‘We are grieving for the life we would have had and for the fact there is so much work and luck involved for him to reach each next step.

‘We both want to devote all our time and energy to him and while it’s had a huge financial and emotional impact, with such an unknown future, we want to give him the best quality of life.

‘Like any parents, we want him to have a long and fulfilling life — all our efforts will go into making that possible.’

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