JESY Nelson broke down in tears on today’s This Morning after an emotional meeting with Health Secretary Wes Streeting.
Pop star Jesy, 34, recently revealed her eight-month-old twin daughters, Ocean and Story, have been diagnosed with the life-changing condition Spinal Muscular Atrophy Type 1.
3The effects of the devastating muscular wasting disease means the girls will likely never be able to walk.
Jesy is now campaigning to include the condition in a heel-prick test carried out on newborns that would enable doctors to treat the condition before it causes life-altering damage.
Today, Jesy reflected on a chat she had with Wes behind closed doors after their filmed interview in which he was moved by a video of sisters, both of whom have SMA.
The eldest daughter is wheelchair-bound but her younger sibling is able to walk due to an earlier diagnosis, highlighting just what Jesy is fighting for.
She said: “Me and Wes have had a private conversation off camera – and if I’m honest, that’s the conversation I wanted on camera – because I actually thought that was more honest, open and raw.
“And even down to the little things when you were shown a video of two sisters with SMA type 1, with one in a wheelchair and one holding her hand running along with her, and I know that, that really impacted you… That’s how life changing it can be.
“I feel so passionate about trying to raise awareness and getting this changed because I believe that no parent should ever have to go through this.”
Getting emotional, Wes said: “I found that video really hard, and I find listening to you as well… I found that video really hard to watch, because the outcomes for those two kids were so different…”
He shared that a screening evaluation is currently in the works, which will see two thirds of newborns screened for the condition. The conclusion of the trial will report in January 2028.
Wes is keen to find out if every child can be included in the testing and if the report date can be brought forward, too.
We revealed this week how Jesy has split from boyfriend Zion Foster – but they remain united in raising their girls.
A source said: “Their priority continues to be the well-being of their daughters.”
Jesy’s pregnancy was later classed as high-risk after the girls were diagnosed with twin-to-twin transfusion syndrome (TTTS), a rare condition affecting identical tots who share a placenta.
Jesy had in-utero surgery and spent several months under medical supervision before the girls were born prematurely in May.
Jesy’s mum Janice first raised concern when she noticed the girls showing limited leg movements.
Symptoms of SMA depend on which type of condition, but the most common include floppy or weak arms and legs, as well as swallowing and breathing problems.
If untreated, the life expectancy of a baby with SMA Type 1 is two years.
Early intervention is considered critical in limiting long-term impacts.
If the twins had been tested and treated in time, there is a chance they would have avoided disability.
It is now unlikely they will regain their neck strength after the disease caused nerve cells to die, leading to progressive muscle weakness.
Ocean and Story are under the care of Great Ormond Street Hospital in central London and have received treatment, including a one-off gene-therapy infusion approved by the NHS.
The Brit Award-winner has launched a petition to force the Government to enforce a non- invasive £4 blood test at birth.
It could help avoid 33 babies a year left needing a wheelchair for life.
Jesy told fans: “I just need you to know that I am so determined to make this happen.
“So I am going to fight as much as I can to make this part of the newborn screening.
“I’m genuinely overwhelmed by the amount of support.
“I just want to say thank you to everyone that shared it, to everyone that wants to learn about it, that’s taking the time to watch it and send me beautiful messages.”
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