Jesy Nelson has received an outpouring of online support after challenging the screening process for Spinal Muscular Atrophy (SMA), the rare genetic condition affecting both of her children.
The former Little Mix star confirmed her twins, eight month old daughters Ocean Jade and Story, had been diagnosed with the condition in an Instagram post on Sunday.
She has since drawn attention to the United Kingdom’s failure to test for SMA1 (Spinal Muscular Atrophy Disease Type 1) at birth, a practice currently available in 45 countries across the world, including the United States.
Astonishingly, the test costs as little as 36 pence to carry out and could potentially lead to affected children enjoying physically healthy lives from birth, should the condition be detected early.
Nelson, 34, has since been praised by the parents of other affected children across the UK by highlighting the issue during a recent appearance on ITV show This Morning, with many stunned by the affordability of SMA1 testing.
In one post, reshared by Nelson on her Instagram platform, follower Katie Hughes – the mother of a young boy living with the condition – called the revelation ‘devastating and shocking.’
Jesy Nelson has received an outpouring of support after challenging the screening process for Spinal Muscular Atrophy (SMA), the rare genetic condition affecting both of her children
The former Little Mix star confirmed her twins, eight month old daughters Ocean Jade and Story, had been diagnosed with the condition in an Instagram post on Sunday
She added: ’36p to change the course of a child’s life, it’s nothing really, is it? I was in tears when I watched that. I felt sick because 36p could have massively changed our little boy’s life.
‘And it would have changed so many little kids out there and their lives and what they go through on a daily basis. It angers me that we’re talking such a little amount, I didn’t realise it was that small.’
On Sunday, Nelson told social media followers that after ‘the most gruelling three or four months’ her daughters had been diagnosed with SMA1.
The disease causes progressive muscle weakness and wasting due to motor neuron loss, but they ‘could have saved their legs’ with early treatment.
During a subsequent appearance on This Morning she explained that because the diagnosis was not made at birth, Great Ormond Street doctors 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 the ITV show, she said, ‘the part that frustrates me the most I knew and saw all of the signs before I knew what SMA was’.
Nelson 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.
In one post, reshared by Nelson on her Instagram platform, follower Katie Hughes – the mother of a young boy living with the condition – called the revelation ‘devastating and shocking’
Nelson reshared numerous supportive posts from followers, many of whom admitting they were shocked by the revelation that an SMA1 test costs just 36p
The price of SMA1 testing was debated on This Morning after Nelson’s appearance on the show
On Sunday, Nelson told social media followers that after ‘the most gruelling three or four months’ her daughters had been diagnosed with SMA1
Health Secretary Wes Streeting has since admitted that Nelson was “right to challenge and criticise how long it takes to get a diagnosis”
‘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.’
Sharing a video of one of the girls’ breathing, 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.
‘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…’
Health Secretary Wes Streeting has since admitted that Nelson was “right to challenge and criticise how long it takes to get a diagnosis”.
The Cabinet minister said he was “determined to look not just at screening for SMA, but to make much better use of genomic medicine”.
Newborn screening for SMA is not available in the UK, but Scotland has announced it will screen babies from the spring.
The UK National Screening Committee does not recommend screening but has commissioned work to reassess this due to developments in treatment.
Streeting told ITV News: ‘My heart goes out to to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable, not least because there will be other parents who are going through what she is going through, who I think will relate very heavily to what she said.
‘She’s challenged us to go further on screening, and she is right to do so.
