Leigh-Anne Pinnock has spoken about the news that Jesy Nelson’s twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA).
Earlier this year, Jesy revealed on Instagram that her baby girls, Ocean Jade and Story Monroe Nelson-Foster, have SMA.
The NHS describes SMA as a “rare genetic condition” that “gets worse over time”.
It is thought to affect one in every 10,000 babies worldwide, with around 48 babies born with the condition in the UK each year.
In a detailed Instagram video, Nelson explained that her mum first became concerned when the twins didn’t seem to be moving their legs much. That observation led to multiple hospital visits and tests, before doctors confirmed the diagnosis.
“After the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one,” she emotionally shared.
“It stands for Spinal Muscle Atrophy which affects every muscle in the body, from legs, arms, swallowing.”
She went on to describe how the condition progresses, and why timing is so critical once SMA is suspected.
Jesy continued: “Over time, it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.
“Once the girls got treated, it was a very rapid process. Time is of the essence with this disease.
“When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their next strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best.”
Since sharing her daughters’ diagnosis, Nelson has been campaigning for SMA screening to be added to the UK’s newborn heel-prick blood test, which is used to check for a range of health conditions shortly after birth.
She has stressed that identifying SMA sooner could dramatically change outcomes for affected babies.
Speaking previously on This Morning, Jesy said: “That’s what’s frustrating.
“If this was the card I was always going to get dealt and there was nothing I could do about it, then it’s almost easier for me to accept.
“But when you know that there is something that can be done about it, and it is life changing to your child, that’s the part that I cannot accept.”
More recently, Leigh-Anne confirmed she had contacted Jesy after hearing about Ocean and Story’s diagnosis, during an interview with Australian radio DJ Smallzy.
“Heartbreaking, just awful. We all obviously did reach out to her, it’s the worst thing ever. I think she’s really incredible for spreading the awareness,” she said.
Asked whether there is still a sense of “sisterhood” between them, Leigh-Anne explained: “I think that’s the special thing about us, we will always be there if we need each other for sure. I think, especially for me, Jade and Perrie, we’re super, super close and I think you need that in this industry too.
“There’s just so much toxicity that can come with it and there’s just so much pressure as well so knowing that you can just reach out to people that are going through it too, we’re the only ones that know exactly what this experience is like. It’s so needed.”