JESY Nelson has revealed the tragic reason her twin daughters’ treatment for SMA was delayed – despite the increased risk of permanent nerve and muscle damage.
The former Little Mix star details the heartbreaking moment Ocean Jade and Story Monroe, who have have Spinal Muscular Atrophy Type 1, are forced to miss out on the gene-therapy infusion earlier this year.
In her new Prime Video documentary, Jesy Nelson: Life Changing, Jesy says Story was rushed to hospital with pneumonia – just days before Ocean was struck down by another illness.
Speaking in the docu-series, which is released on Friday, July 17, Jesy said: “Not long after we got the diagnosis, they were booked in to have their treatment.
“Then Story got pneumonia and was really struggling to breathe.
“She started choking so we had to rush her into hospital. It breaks my heart because she’s so vulnerable.
“That’s when we were told that she can’t have the treatment.”
Any delay in treatment increases the chance of permanent nerve and muscle damage
After close monitoring, it was decided that Story and Ocen were not well enough to receive the gene therapy.
Jesy added: “That was when she got given her breathing machine.
“She came home and then Ocean got ill.”
During the episode, which began filming straight after the cameras stopped rolling on her first series, Life After Little Mix.
Her partner Zion Foster – who has since split from Jesy – said: “I’m not equipped to deal with this. I’m out of my depth; emotionally, physically and mentally.”
The documentary covers their split, which was revealed by The Sun earlier this year.
Jesy has since thrown herself into work – tirelessly campaigning to raise awareness of SMA and pressure the government to add the condition onto the NHS newborn heel-prick test, which currently screens for ten other conditions.
On Wednesday, April 1, the Department of Health and Social Care announced that England will bring forward the newborn screening of SMA.
A phased rollout will begin in October 2026. However, screening will not be available in all parts of England.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
- Type 1 is diagnosed within the first six months of life and is usually fatal.
- Type 2 is diagnosed after six months of age.
- Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
- Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.
It affects around 1 in 11,000 babies.