Jesy Nelson, a pop star, revealed that the diagnosis of her newborn twins will make them unable to walk or regain their neck strength.
Jesy Nelson has revealed the devastating diagnosis that her newborn twins have received just months after being born. In a social media video, the former Little Mix singer revealed her twins – Ocean Jade Nelson-Foster and Story Monroe Nelson-Foster – have been diagnosed with spinal muscular atrophy type 1 (SMA1).
The disease is a rare and severe genetic condition that affects muscle strength and movement, meaning some children will fail to walk and talk as they get older. In the video, a teary-eyed Jesy revealed the shock of the diagnosis, admitting she has become a “nurse” overnight to her twins.
While SMA is rare, experts say early diagnosis is crucial – and being aware of potential warning signs can help families seek support and treatment as quickly as possible. Here, we take a look at some of the early warning signs that can be hard to spot.
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Spinal muscular atrophy type 1: what is it?
The nerve cells responsible for controlling muscle movement are affected by spinal muscular atrophy (SMA), a genetic neuromuscular condition. The most severe type 1 disease, sometimes referred to as Werdnig-Hoffmann disease, typically strikes babies under six months of age.
The condition makes daily tasks like swallowing, lifting the head, and breathing more difficult because of progressive muscle weakness.
SMA is inherited when both parents carry defective genes, frequently without knowing it.
Early indicators that parents might notice
The earliest indications of SMA1 can be subtle at first, and they may be confused with general developmental delays, say doctors. Among the possible indicators are:
- Floppiness or a lack of muscle mass (babies may feel strangely limp while being held)
- holding their head up is challenging
- Arm or leg movements that are weak or fewer.
- Shallow breathing or breathing with the chest rather than the tummy
- difficulty swallowing or feeding
- A weary cry
SMA1-positive babies frequently fail to reach their intended motor milestones, such as rolling or pushing up when they are tummy time.
Why it’s important to get a diagnosis early
Medical professionals emphasize the importance of an early diagnosis. Some children with SMA have undergone a change in their outcomes in recent years, especially if they are treated as early as possible.
Jesy Nelson’s background
The 34-year-old singer and her musician fiancé Zion Foster, 27, welcomed daughters Ocean Jade and Story Monroe Nelson-Foster in May after a difficult pregnancy.
On Sunday the singer shared a video to Instagram to say her girls have the most severe form of the disease, which kills muscles in the body over time. Jesy had to stop herself from crying as she said: “I am grieving a life I thought I was going to have with my children.”
The former girlband star first visited her GP after her mother realized the twins weren’t moving as much as they should. Jesy claimed she told herself not to “compare” the babies to other babies of the same age because she had been warned that they would develop more slowly as they were premature. Jesy pushed for answers while the twins were battling with SMA Type 1 and her daughters were given the keys to feeding.
Jesy said in an Instagram update that she was unsure where to begin with the video. My mother noticed a few months ago that the girls’ legs weren’t moving as much as they should.
I didn’t really care about it at the time, I thought. Your babies are premature, so don’t compare your babies to other babies, I was told right away when I left the NICU. They simply accept them as they are, and they won’t achieve the same goals.
She said, “I didn’t really hear the alarm bells.” I was instructed not to compare them to my first set of children because they are my first. The girls’ health care providers reaffirmed that everything was alright and that the girls were healthy.
Later, there were some indications that the girls were having trouble consuming enough food. Our babies are not consuming as much food as they should, we would tell the doctor. They said it was fine and to give it a restless effort.
Jesy has been informed that her twins may never walk or be able to regain their neck strength. Although there is no known treatment or cure for SMA, there are options for assisting people in achieving the best possible quality of life.
READ MORE: Jesy Nelson’s boyfriend Zion breaks silence with hopeful message and new photo of twins
Source: Mirror
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