UK (Parliament Politics Magazine) – Ex-Little Mix star Jesy Nelson revealed her twin daughters have SMA Type 1, a serious muscle-wasting condition that may prevent them from walking.
As reported by BBC culture correspondent Noor Nanji, former Little Mix member Jesy Nelson has announced that her twin baby girls have a rare genetic disorder that may prevent them from walking.
What did Jesy Nelson say about her twin daughters’ SMA type 1 diagnosis?
Jesy Nelson gave birth prematurely last May to her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, with musician Zion Foster.
On Sunday, she shared in an Instagram video that the girls have been diagnosed with Spinal Muscular Atrophy (SMA), which she described as the “most severe muscular disease.”
Nelson stated,
“It does affect every muscle in the body, down to legs, arms, breathing, swallowing.”
In her Instagram video, she revealed that her daughters had shown limited movement in their legs and were struggling to take in food.
She said,
“After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1.”
The former Little Mix star added,
“Essentially, what it does is, over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
The singer stated that the twins underwent assessments at London’s Great Ormond Street Hospital.
At the hospital, Nelson said she was told that her daughters would
“probably never going to be able to walk. They probably will never regain their neck strength, so they will be disabled.”
Nelson said her daughters have undergone treatment, and she said she was “so grateful” for it, adding,
“Because if they don’t have it, they will die.”
According to the singer, she had to personally assist her daughter with medical care, including placing her on “breathing machines” since the diagnosis.
She added,
“The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360.”
The ex-Little Mix member expressed hope that her daughters would “defy all the odds” with proper care, and said sharing their story could help other children receive faster diagnoses.
After parting ways with Little Mix in December 2020, she pursued a solo career, releasing her 2021 single Boyz in collaboration with Nicki Minaj.
How did Jesy Nelson describe her body after the birth of her twin daughters?
In October, Jesy Nelson said she had “never felt prouder” of her body after giving birth to her twin daughters, adding in an Instagram post that motherhood made her “realise how incredible my body actually is.”
Sharing pictures of herself in her underwear with her daughters, she said,
“33 years of extreme diets, 33 years of putting myself down wishing my belly was flatter, wanting my waist just a little smaller and almost going through with a boob job, to now standing here having this photo taken.”
She added,
“I can honestly say I’ve never felt prouder of my body and what it has been through! Yes my boobs hang lower and my belly is bigger and squishier – it doesn’t look how it used to, but my god it created the best gift that has ever happened to me.”
Nelson said,
“If there’s anything I’ve learned over the past nine months of being pregnant, it’s that I never want my girls to feel the way I did about my body for so many years.”
The ex-Little Mix member continued,
“So to all the future mummies or the mummies that have just given birth, if you’re struggling with how you are feeling in yourself or are maybe even feeling the pressure to “snap back” just take a moment to remember what YOU did! Be kinder to yourself and remember you are INCREDIBLE!!!”
In March, Nelson confirmed she had a “successful” procedure to address potential complications from TTTS in her pregnancy.
Twin-to-twin transfusion occurs when irregular placental vessels send excess blood to one twin, leaving the other with less.
Following her surgery in March, she added,
“The TTTS has cleared up, the operation was a success, which is just absolutely incredible. We are so, so lucky to have the most amazing doctors.”
The singer revealed the twins are monochorionic diamniotic, sharing a single placenta but each having separate amniotic sacs.
What did SMA UK reveal about screening and treatment for SMA type 1?
SMA UK warns that while the treatment delivers a functional gene to the body, it must be administered promptly to avoid permanent nervous system damage.
At present, only newborns with siblings affected by SMA undergo screening. The charity is pushing for the condition to be included in the newborn blood spot test, which already checks for 10 other rare conditions.
SMA UK reported that around 47 babies were born with the condition in the UK last year, though about one in 40 people carry the gene that can cause it.
What are the symptoms of SMA type 1?
- Babies show very weak, floppy muscles early in life
- Unable to sit up, lift their head, or roll over
- Cry and cough are weak due to muscle weakness
- Breathing difficulties can lead to repeated lung infections
- Trouble swallowing and feeding, causing slow weight gain
- Tiny involuntary movements of the tongue may appear
- Legs often splayed out in a “frog-leg” position
- Reflexes are weak or may be absent
