Jesy Nelson reveals heart-stopping moment her mum raised the alarm on twins’ SMA struggle after moving to Cornwall
JESY Nelson has described the terrifying moment her mum raised the alarm about her twins’ SMA struggle.
The pop star secretly moved to Cornwall after giving birth to the two little girls following a high-risk pregnancy.
She says her mum Janice noticed Ocean and Story’s lack of leg movement on a trip to visit them.
Speaking on Jamie Laing’s podcast Great Company with Jesy Nelson, the former Little Mix star said: “Me and Zion decided we wanted to move to Cornwall because our babies had been through all this trauma, and we just wanted them to grow up in a peaceful setting and just be around the sea and live like a kid.
“I honestly was not even taking notice of their legs because they’re my first set of children, so I don’t know how they should be moving their legs, or what they should and shouldn’t be doing anyway.
“Because we had just moved six hours away, my mum wasn’t with me every day.
“I think she noticed how much it had deteriorated, and she said, ‘Jesy, they don’t move their legs very much. Have you noticed that?’
“She kept comparing them to my nephew, but I said George was a full time baby and because the twins were premature you can’t compare them.
“She said, ‘I know Jesy, but something’s not right’.
“My mum is such a such a worrier. She worries about everything – a bit like me, she thinks the worst in every situation.
“And so I just thought that was her over-worrying then a week went by, and I remember changing their nappy and just thinking ‘oh, god, they actually don’t move their legs at all’.
“For some reason they just stopped.”
Fearing her mum was right, Jesy booked to see a paediatrician straight away.
After being told the babies needed blood tests and a brain scan, Jesy left the doctors in tears.
She was later told the identical twins have Spinal Muscular Atrophy Type 1 — the most severe form of a rare disease affecting muscle strength and movement.
Jesy is now working tirelessly to raise awareness of SMA and campaigning for the condition to be added to the NHS newborn heel-prick test, which currently screens for ten other conditions.
She spoke to The Sun about the diagnosis and her new new six-part docuseries on Prime Video, which follows her journey into motherhood as she reflects back on her time in Little Mix.
It’s the first time she’s opened up about quitting the band in 2020.
Read our full interview with Jesy about hope of reconciling with her former Little Mix friends and mending her relationship with Simon Cowell here.
- Jesy Nelson: Life After Little Mix will be aired on Prime Video from February 13.
- Listen to Great Company with Jesy Nelson whereever you get your podcasts.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a person’s 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 faulty 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.