Jesy Nelson revealed her twin daughters have been diagnosed with spinal muscular atrophy (SMA) in an emotional video while attempting to raise further awareness for the debilitating condition.
The 34-year-old former Little Mix singer, who gave birth prematurely to twins in May, took to social media to share more details about her childrens’ health challenges.
In the video, Nelson reveals that her mum first flagged that her twins weren’t as active as other babies their age, but medics appeared to dismiss concerns until tests finally confirmed they had SMA.
The babies were rushed to treatment, however Jesy has been told that her girls may never walk.
Since the diagnosis, Nelson and her partner, Zion Foster, have been frequently in and out of the hospital as they do everything to make sure the girls get the care they need.
“We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best,” Nelson explained.
“Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.”
SMA is a genetic neuromuscular disorder that affects people’s muscles, and which, left untreated, can be fatal.
Jesy explained that she wanted to make an honest video to raise awareness and help other mothers spot the signs.
Here’s what you need to know.
What is spinal muscular atrophy?
The NHS describes SMA as a rare genetic condition that causes muscles to progressively weaken as a person ages.
Caused by mutations in the SMN1 gene, this condition leads to muscle weakness and wasting, which can be severely debilitating.
According to SMA Europe, it can affect people’s ability to carry out daily activities such as eating, sitting, walking, and even breathing.
Often grouped into categories, Jesy’s babies have SMA1, which is usually considered the severest form of this condition and develops in babies under six months old.
The condition often develops when two parents carry the SMN1 gene, giving children a one-in-four chance of developing it when they’re born.
Around one in every 10,000 babies worldwide are born with a type of SMA, estimates from Muscular Dystrophy UK reveal. Unless treated, babies with SMA1 may not survive past the age of two.
At the moment, there is no cure, but medicine has advanced rapidly, leading to breakthroughs in treatment that help manage symptoms and improve quality of life.
What are the signs?
The main sign of most SMA types is muscle weakness, but there are also signs specific to each type of SMA. There are several signs that a baby may have SMA1:
- ‘Floppy’ movements and difficulty lifting their arms and legs
- Abnormal breathing
- Difficulty sitting without support
- Poor head movement
Detecting SMA early is key to having better chances.
The NHS offers a heel prick test for babies at five days old that screens for nine rare but serious health conditions. At the moment, SMA isn’t among those tested, but there are growing calls from advocacy groups to add it.
