Jesy Nelson’s heel prick bill has received support from MP Wes Streeting as she fights for SMA1 screening at birth after her twins’ muscular disease diagnosis.
This week, the former Little Mix star, 34, said that after ‘the most gruelling three or four months’ her eight-month-old daughters Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy.
The genetic neuromuscular disease SMA1 causes progressive muscle weakness and wasting due to motor neuron loss, but they ‘could have saved their legs’ with early treatment.
Sharing an update to his Instagram Story on Thursday, Wes, who is Secretary of State for Health and Social Care, said he will be ‘picking up issues raised by Jesy.’
He wrote: ‘Jesy Nelson and parents like her are amazing… I will be picking up the issues Jesy has raised around screening.’
His response came following Jesy’s appearance on This Morning on Wednesday where she detailed her twins diagnosis.
Jesy Nelson’s heel prick bill has received support from MP Wes Streeting as she fights for SMA1 screening at birth after her twins’ muscular disease diagnosis
Sharing an update to his Instagram Story on Thursday, Wes, who is Secretary of State for Health and Social Care, said he will be ‘picking up issues raised by Jesy’
Jesy has explained that because the diagnosis was not made at birth, Great Ormond Street doctors have advised that her girls ‘are probably never going to be able to walk or regain their neck strength so they will be disabled’.
Speaking on This Morning an emotional Jesy said ‘the part that frustrates me the most I knew and saw all of the signs before I knew what SMA was’.
Jesy and her partner Zion noticed symptoms such as their twins’ bowed legs and unusual breathing but were reassured by health visitors and GPs that as their babies were born premature they may be delayed in hitting certain milestones and not to compare their children to others.
‘I potentially could have saved their legs. I don’t think I’ll ever be able to get over or accept it. All I can do is try my best and make change.
‘It was weird because from when I was in NICU [Neonatal Intensive Care Unit], the way they used to lay on my chest, they would have frog leg position.
‘I did say to my mum, “Isn’t their belly an unusual shape? They breathe from their belly,”‘ Jesy told This Morning’s Ben Shephard and Cat Deeley.
She showed a video of one of the girls’ breathing as she admitted ‘that’s what frustrating – for me, if these were the cards I was always going to be dealt and there was nothing I could do about it, it would be easier for me to accept’.
‘But when you know there is something that can be done about it and it is life changing to your child, that’s the bit that I cannot accept.
He wrote: ‘Jesy Nelson and parents like her are amazing… I will be picking up the issues Jesy has raised around screening’
His response came following Jesy’s appearance on This Morning on Wednesday where she detailed her twins diagnosis
‘When I took them home from NICU, the only thing I was really concerned about at that time was like checking their temperature, making sure they’re still breathing. I’m not checking to see if their legs are still moving…’
Jesy explained that it was her mother Janice who first pointed out something was wrong, which the star admitted was ‘alarming when you have healthcare visitors coming round and saying they’re absolutely fine, they look healthy’.
‘It took for my mum to say “they don’t move their legs the way they should be moving”.
‘Bless my mum, she’s a worrier, and I just thought my mum was being a worrier – but I noticed they were moving [their legs] less and less and less, until it just stops.
‘That is why it’s so important and vital to get treatment from birth and that it’s detected from birth.’
She added that it makes her ‘so sad’ to watch videos which show the twins gradually losing use of their legs over the course of their first month.
‘That’s how quick it is and that is why it’s so important to get treatment from birth,’ she said.
Later Jesy broke down and was comforted by Cat as she said she was ‘struggling… but that is the part that like really gets me, is I just want to be their mum, I don’t want to be a nurse’.
If SMA1 is treated pre-symptomatically (at or near birth), the disease can be largely prevented, and many children develop with minimal or no symptoms.
Jesy’s daughters have undergone treatment but their prognosis isn’t certain.
She showed a video of one of the girls’ breathing as she explained ‘I knew and saw all of the signs before I knew what SMA was’
Jesy explained that it was her mother Janice (pictured) who pointed out something was wrong, which she admitted was ‘alarming when you have healthcare visitors saying they’re fine’
Later Jesy broke down and was comforted by Cat as she said she was ‘struggling… but that is the part that like really gets me, is I just want to be their mum, I don’t want to be a nurse’
The singer has revealed that she has put a petition in to try and get newborn babies screened from birth for SMA and is ‘determined and ready to fight’ to see it approved.
Spinal muscular atrophy (SMA) is a rare inherited neuromuscular condition that affects the motor neurons – the nerve cells in the spinal cord responsible for controlling muscle movement.
It is caused by a fault in the SMN1 gene, which normally produces a protein essential for keeping these motor neurons alive.
Without enough of this protein, the neurons gradually die, meaning messages from the brain can no longer reach the muscles and the muscles slowly weaken and waste away.
The condition is inherited in an autosomal recessive pattern, meaning a child must inherit a faulty copy of the gene from both parents.
Around one in 40 people carries the altered gene, often without knowing it.
According to the NHS, about 70 children are born with SMA each year in the UK, and without treatment fewer than one in 10 (8 per cent) will survive to the age of two.
The website of the charity SMA UK says that ‘early detection of the condition is critical’ for better outcomes for babies, adding that the UK is ‘shockingly far behind’ in not including SMA in the NHS newborn blood-spot screening test, which is offered when a baby is five days old and currently looks for nine rare but serious conditions.
Experts say the early symptoms of SMA-1 can be easy to miss – particularly in premature or medically vulnerable babies, where developmental delays are often initially put down to an early birth.
Early signs can include reduced movement in the arms or legs, poor head or neck control, feeding difficulties or weak sucking, shallow or laboured breathing, frequent chest infections and delays in reaching basic motor milestones.
Specialists stress that any concerns about muscle weakness or feeding problems in young infants should be urgently assessed, regardless of whether a baby was born prematurely.
Time, they warn, is critical – with early diagnosis and rapid treatment offering the best chance of improving long-term outcomes.
