Jesy Nelson announces new TV documentary as she campaigns for SMA tests after devastating prognosis means her twins, nine months, may not live beyond the age of two

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Jesy Nelson revealed a new TV documentary on Thursday, continuing her efforts to have babies tested for Spinal Muscular Atrophy (SMA) shortly after birth, following her own twins’ diagnosis.

The 34-year-old singer recently shared the heartbreaking news that her nine-month-old daughters, Ocean Jade and Story Monroe, have a very limited life expectancy and may not live past the age of two.

Jesy shared that even after receiving the sad news, they chose to continue filming because she’s determined to ‘make a difference.’

Jesy Nelson talked about her upcoming documentary, ‘Jesy Nelson: Life After Little Mix,’ and future projects during a question-and-answer session in London on Tuesday.

She expressed hope that viewers would keep following their story. After the girls received their diagnosis, they made the decision to continue filming.

Despite the difficulty, we realized there was a purpose to this, and we needed to try and make something positive happen.

Jesy explained she’s working to include Spinal Muscular Atrophy (SMA) in the newborn heel prick test, and that’s currently her biggest priority, alongside caring for her daughters.

I haven’t received the feedback yet, but I anticipate it will be challenging. Still, I’m really glad we kept detailed records, because I truly believe we can make a difference – I have a strong feeling about it.

It’s wonderful to see how many people are working to share my story, and I’m confident this program will help reach even more people.

Spinal Muscular Atrophy type 1 (SMA1) is a genetic condition that causes increasing muscle weakness and loss of muscle mass because of the loss of nerve cells controlling muscles.

Jesy recently discussed her hopes for her children on Jamie Laing’s podcast, Great Company. Following her split from the children’s father, Zion Foster, 26, she expressed optimism that with treatment, her babies will live longer, healthier lives.

Jesy explained that spinal muscular atrophy is a condition where the muscles weaken and waste away because people with it are missing a gene that most of us have.

Their muscles are weakening and shrinking, and without prompt treatment, they will eventually stop working altogether. This impacts essential functions like breathing and swallowing, and tragically, these children usually don’t survive past the age of two.

Things aren’t great, but I’m learning to accept the situation and focus on making the best of it. My daughters are incredibly strong and I truly believe they’ll overcome any challenges they face.

Jesy Nelson, who used to be in the group Little Mix, is calling on the NHS to broaden its newborn screening process to include a test for spinal muscular atrophy, a condition currently not routinely checked for.

Tests cost around £1 each and the twins ‘could have saved their legs’ with early treatment. 

Jesy’s twins experienced a serious condition called twin-to-twin transfusion syndrome while still in the womb, and they were born early, at 31 weeks.

Oh my gosh, she explained it all to me! It’s called TTTS, and it’s so rare, it only happens to a tiny percentage of identical twins. Basically, if they share a placenta – and that’s how it happens – one baby ends up getting way more nutrients than the other, and it’s just… awful for both of them. It’s seriously scary how unfair it is!

Regardless of the specific issue, an imbalance of nutrients – whether too much or too little – is harmful to infants. Without treatment, the outcome is often fatal; survival rates are unfortunately very low, around 5%.

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2026-02-06 04:33