Jesy Nelson has opened up about one of the deepest fears she carries as a mother—that one day her twin daughters may question why the warning signs of their devastating illness were not spotted sooner.
The former Little Mix star, 35, revealed in January that her 14-month-old twin daughters, Ocean and Story, had been diagnosed with Type 1 Spinal Muscular Atrophy (SMA), a rare genetic condition that causes progressive muscle weakness and means they are unlikely ever to walk independently.
Because newborn SMA screening is still not routinely available across the UK, the twins were never tested at birth. By the time doctors diagnosed the condition, the opportunity for early treatment that could have dramatically changed their lives had already passed.
In emotional scenes from her new Prime Video documentary, Jesy Nelson: Life Changing, the singer admitted she constantly worries about how her daughters may feel when they are older.
“No one should ever have to go through this and it infuriates me that one day I’m going to have to have a conversation with them and say maybe this didn’t need to be this way and they’re going to have questions for me,” Jesy said.
“I don’t know, these are things that I have to battle with every day of like what are they going to ask when I’m older?
“Are they going to be mad at me that I didn’t see the signs sooner and that I could have potentially given them a completely different life?”
Jesy admitted that while many people remind her that disability does not define a child, she still struggles to accept what her daughters have lost.
“That wasn’t what their life should have been. And I know people keep messaging me, going, ‘Disabilities don’t define children,’ and they don’t.
“But I will never, I can’t accept that they could have been able to walk and run and live how a child should live.
“That’s the part that I will never be able to f*****g accept and that is why I’m doing everything that I can to try and change this.”
She said her determination to campaign for nationwide newborn screening comes from a desire to spare other families the same heartbreak.
“Because if I can stop other families from having to go through all of this s**t and hate that we have to go through, then I’ve done something good out of this horrendous experience.”
Jesy also addressed criticism from people who believe her financial success means caring for her daughters should be easier.
“There’s so many comments like, ‘Well, she’s rich. She can get loads of helpers in, and she doesn’t even have to do any of this stuff.'”
She made it clear that hiring carers is not something she wants.
“I don’t think people even understand. I don’t want to get strangers in to look after my babies.
“I have nothing against anyone that wants to do that. But my thing is that because of everything that happened from birth, I’m not over that yet.
“I don’t want to just hand them over to anyone.”
Elsewhere in the documentary, Jesy recalled the overwhelming grief she felt immediately after receiving the diagnosis.
“I am just going to be heartbroken for the rest of my life.”
However, following the twins’ first birthday, she said she has slowly found purpose amid the pain.
“The pain does get less. There is a reason that this is happening.
“There is a whole community fighting to be heard and that is the reason.”
Jesy has previously explained that doctors reassured her the twins’ development should be judged differently because they were born prematurely, meaning she had no reason to suspect anything was seriously wrong.
By the time SMA was finally diagnosed, it was already too late for treatment that could have preserved their ability to walk.
Since sharing Ocean and Story’s diagnosis publicly, Jesy has become one of the UK’s leading campaigners calling for routine newborn SMA screening.
Earlier this month, she celebrated a milestone after one of the twins managed to sit upright in her wheelchair without a breathing tube.
Last month, however, the singer was left devastated after MPs stopped short of introducing universal newborn screening across England.
Fighting back tears outside Parliament, Jesy said:
“I’m going to be completely honest, I was absolutely fuming. I feel so let down.
“Our children’s lives could look so different, and to know that we are still debating it… Based on where you live, how does that make sense? How is that fair?”
Her petition calling for nationwide newborn screening attracted more than 150,000 signatures.
Under the current rollout, only around 72 per cent of babies born in England will initially receive routine SMA screening, leaving many families still without access depending on where they live.
