Former Little Mix singer Jesy Nelson has she is not going to stop talking about her twin babies’ SMA1 (spinal muscular atrophy) diagnosis until “something changes”.

The 34-year-old, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiance Zion Foster, revealed in a post on Instagram last month that they had been diagnosed with the rare genetic condition.

Speaking to the Press Association, the singer said she posted the video to raise awareness about SMA1, and said she hopes her advocacy will save others from the “horrendous heartbreak” she has been through.

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Nelson said: “The whole reason that I made that video about the girls’ diagnosis is if one person sees this video and spots these signs in their baby and catches it early, then maybe they’ll get the diagnosis and have the treatment.

“They won’t have to go through this horrendous heartbreak that I’ve been through.”

When announcing her babies’ condition last month, Nelson said her daughters’ diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.

She told the Press Association that spotting the condition early is “life-changing”, adding: “It’s a matter of ‘your child will be disabled’ or ‘your child will walk’.”

The condition causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems, according to the NHS website.

Nelson is also starting a petition to get screening for the condition added to the newborn blood spot screening test, also known as the heel prick test, which the NHS says is a test offered to every baby at five days old to screen for nine rare but serious health conditions.

The singer met with Health Secretary Wes Streeting last month to speak about the life-changing impact early detection of the condition could have had on her twins.

Nelson said: “He said he’s committed to doing whatever he can to help get this change.

“I just really hope that he is true to his word and he and he does make it happen.

“It was a positive move. It was the right step forward. I’m not going to stop talking about this until something changes.”

Speaking about her recent activism, she added: “It has caused a lot of commotion and it’s been amazing because the SMA community have been screaming and shouting about this for years, and it’s never been taken seriously.

“I’m just really praying that it does eventually get changed sooner rather than later.”

Irish News

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