Ellie Kemp
The mom of a baby with SMA Type 1 has spoken out about the devastating symptoms of the condition as she extended an offer to Jesy Nelson.
The former Little Mix star revealed her baby twins have been diagnosed with the 'severe' genetic condition in an emotional Instagram video over the weekend.
Jesy, 34, welcomed daughters Ocean Jade and Story Monroe Nelson-Foster in May 2025 with fiancé Zion Foster.
The twins were born prematurely and spent around four weeks in the NICU.
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After a 'gruelling three to four months and endless appointments', the girls have been diagnosed with spinal muscular atrophy (SMA) Type 1.
The Cleveland Clinic explains that SMA is a genetic condition that causes worsening muscle weakness. Type 1 shows up in babies less than six months old.
The website adds that infants may have difficulty swallowing and breathing and may never be able to lift their neck.
Tragically, without breathing support, children with SMA Type 1 die before their second birthday.
Jesy told fans: "When [doctors] assessed the girls at Great Ormond Street [Hospital], we were told they were never going to be able to walk.
"They would probably never regain their neck strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best."
Mom, author and childcare expert Laura Amies knows all too well the heartbreak and grief that comes with an SMA Type 1 diagnosis.
Her daughter Elisabeth was seven months old when she was diagnosed by a private specialist.
In a TikTok video addressed directly to Jesy, Laura proclaimed there was still 'joy to be had' despite dealing with the devastating, lifelong condition.
Elisabeth, affectionately called Piglet by her parents, began gene therapy two months later - which is 'really late', according to Laura.
It was initially believed Elisabeth was so weak she would never regain such strength.
Now, at 16 months old, she has made some real progress.
"She has regained head control and can look up and down and left to right," Laura said, adding that Elisabeth has also started using her 'pincer grip'.
Addressing Jesy, she said: "I’m here if you want a support, a shoulder to cry on, somebody to cry with... even a play date!"
Elsewhere in the video, Laura said: "I take comfort in knowing that Piglet will hopefully show life-limiting conditions and disabilities in a different light, to show people what they are capable of instead of focusing on what they are not capable of... There is hope."
Laura has used her social media presence to raise awareness of SMA Type 1 and its symptoms.
One of the first concerns Laura had was the day after Elisabeth was born.
She told the Daily Mail the skin around her daughter's mouth and lips had gone 'completely blue' and she wasn't breathing.
The baby wouldn't latch, had no interest in feeding and also developed purple, cold marks on her arms.
In another Instagram post, Laura also explained how Elisabeth had 'reflux' and was 'in agony after every feed, regularly choking on mucus and showing less movement'.