Jesy Nelson victory as newborns to be screened for life-changing condition affecting her twin daughters
Jesy Nelson has welcomed an "amazing" announcement that the NHS will start testing newborns for a life-changing muscle-wasting disease.
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After the former Little Mix star revealed that her ten-month-old twins suffered with the illness, Health Secretary Wes Streeting has brought forward plans to screen more than 400,000 babies for spinal muscular atrophy (SMA).
After the heartbreaking diagnosis, Nelson had begun a campaign to raise awareness of how late diagnosis affected her babies.
Jesy revealed that the late diagnosis of her twins meant they began treatment too late.
The singer has been told that Ocean and Story will never walk because of the irreparable nerve damage they have suffered.
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The singer told The Mirror: “This is massive. Now there are potentially 404,000 babies who will be screened over the next 12 months.
"I just wish this had been here for my babies and for all the SMA babies who never got tested. That’s why I wanted to do this - I don’t want anyone to have to go through this heartbreak.”
The UK's National Screening Committee had initially refused to roll out £5 SMA blood tests on the NHS - but Jesy's pleas after the birth of her twin daughters, Ocean and Story, has seen a pilot confirmed.
Most newborns in England will be screened for the condition at birth from October this year.
An estimated 404,000 will be tested for the disease, but 163,000 others will be untested to act as a control group for the study.
Jesy told the Mirror: “It's just bittersweet because we're not fully there yet. It's like literally a postcode lottery because it's not the whole of England. There'll be 163,000 babies that won't get screened - and that is a lot of babies. If you live in a certain part of the country you're not going to get tested.
“There are truly life changing treatments out there so no baby should be an experiment - showing what the difference is. This shouldn't even be a thing. All babies should be getting tested and all babies should be living.”
In a letter to Jesy, Mr Streeting said: “It was great to meet you both. I really appreciated you sharing your personal experiences of raising children with SMA and applaud the work you have both done highlighting the issue and seeking earlier diagnosis.
“My officials are still working through the challenges related to extending the ISE to the whole of England and I will keep you both updated of progress in this area. As you know, I’d like to see a full rollout.”