Jesy Nelson shares 'sad' update on twin daughters diagnosed with 'heartbreaking' condition
Jesy Nelson has given an update on her daughters' health after opening up about their SMA Type 1 diagnosis earlier this year.
SMA is a 'genetic condition that causes worsening muscle weakness', according to the Cleveland Clinic, and while there is no cure for the disease, certain therapies and medications can help manage symptoms.
The 34-year-old singer welcomed Ocean Jade and Story Monroe Nelson-Foster last May, both of whom she shares with her now ex-fiancé, Zion Foster.
The babies were born prematurely and spent around four weeks in the Neonatal Intensive Care Unit.
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In January, Nelson revealed that she noticed her children's legs weren't moving as they should be, which led to her paying the doctors a visit.
"After the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one," the former Little Mix star said at the time.
"It stands for Spinal Muscle Atrophy which affects every muscle in the body, from legs, arms, swallowing."
In a recent update posted to social media, Nelson has revealed her twins have been fitted with leg splints to 'flatten their feet'.
"So, today I had to go and pick up the girls’ splints because they’re feet are pointing this way and they need to be flattened out and it made me really sad," the singer explained in a video.
Showing off the splint to her followers, Nelson added: "But have you ever seen anything cuter in your life, look at them."
The mom then went on: "This one is Story's, she has hearts and Ocean has butterflies. It made me sad though, it’s just another reminder."
Ever since Nelson opened up on her twins' SMA Type 1 diagnosis, she has spoken candidly about the daily struggles of having children with the condition.
"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," Nelson previously said on Instagram.
"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."
Early diagnosis is key when it comes to SMA Type 1, with Nelson campaigning for newborns to have a heel-prick blood test, which could detect the disease.
"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," Nelson said during an appearance on ITV's This Morning.
"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."
In February, the singer addressed split from Foster, telling The Daily Mail, it's the 'traumatic experience' the family has been through and their daughters being their 'main priority' and 'main focus' which led to them deciding to part ways.
"We are still friends, and we are still united in co-parenting our daughters, they are our main focus, that's all we can do, be the best possible parents we can right now," she added.
The couple appeared in Nelson's recent Amazon Prime doc, Life After Little Mix, in which she also made a major claim about her former bandmates.
What are the symptoms of SMA?
There are five different types of SMA, and Nelson's daughters have Type 1.
According to the Cleveland Clinic, symptoms of this particular SMA will come about within the first six months of life and include limited head control and decreased muscle tone.
The website states: "Infants with type 1 SMA also have difficulty swallowing and breathing. Without breathing support, children with type 1 SMA die before their second birthday."
Other symptoms of Type 1 SMA include:
- Lack of reflexes
- Inability to sit without support
- Abnormal breathing pattern
- A bell-shaped chest
- Facial muscle weakness
Callum Jones