A mother of a child with SMA Type 1 has shared her experience with the condition and extended support to Jesy Nelson.
The singer, formerly of the group Little Mix, recently disclosed in a heartfelt Instagram video that her twin babies have been diagnosed with this serious genetic disorder.
Jesy, 34, became a mother to Ocean Jade and Story Monroe Nelson-Foster in May 2025 alongside her partner Zion Foster.
The twins arrived prematurely and spent approximately a month in the NICU.
Following months of rigorous medical consultations, the twins were diagnosed with spinal muscular atrophy (SMA) Type 1.
According to the Cleveland Clinic, SMA is a genetic disease leading to progressive muscle weakness, with Type 1 manifesting in infants younger than six months.
The clinic also notes that affected infants may struggle with swallowing and breathing and might never develop the ability to hold up their heads.
Sadly, without intervention, children with Type 1 SMA often do not survive past their second birthday.
Jesy shared with her followers: “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.”
Laura Amies, a mother, author, and childcare expert, is familiar with the pain and sorrow an SMA Type 1 diagnosis brings.
Her daughter Elisabeth was diagnosed at seven months old by a specialist.
In a TikTok video directed at Jesy, Laura emphasized that despite the challenging nature of the condition, there is still joy to be found.
Elisabeth, who her parents affectionately call Piglet, began gene therapy two months after diagnosis—a timing Laura describes as “really late.”
Initially, it was believed she was too weak to gain any strength back.
However, at 16 months old, Elisabeth has made significant strides.
“She has regained head control and can look up and down and left to right,” Laura noted, mentioning that Elisabeth has also developed a ‘pincer grip’.
Speaking to Jesy, Laura offered her support, saying: “I’m here if you want a support, a shoulder to cry on, somebody to cry with… even a play date!”
In her video, Laura expressed: “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 uses her social media platforms to inform others about SMA Type 1 and its signs.
One of Laura’s earliest concerns arose the day after Elisabeth was born.
She recounted to the Daily Mail how her daughter’s skin around the mouth and lips turned ‘completely blue’ due to breathing difficulties.
Elisabeth showed no interest in feeding, was unable to latch, and developed cold, purple marks on her arms.
In another Instagram post, Laura described how Elisabeth suffered from ‘reflux’, was ‘in agony after every feed, regularly choking on mucus and showing less movement’.