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By Lydia Patrick
Life & Trends Reporter
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Girlband star Jesy Nelson revealed in an emotional Instagram video that both of her twins had been diagnosed with a genetic condition called Spinal Muscular Atrophy (SMA), type 1.
U.K.-based Nelson, 34, welcomed her twins, Ocean Jade and Story Monroe Nelson-Foster, prematurely at 31 weeks last May with her partner, Zion.
In her video, Nelson, a former Little Mix member, tearfully explained how the first warning signs appeared. Her mother noticed that the twins were not moving their legs as much as expected, but at first, Nelson was not concerned.
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The Early Warning Signs in Nelson's Twins
“From the minute that I left NICU [neonatal intensive care unit], I was told, your babies are premature, so do not compare your babies to other babies. They won't reach the same milestones. Take them as they are, and they will get to where they need to be,” she said.
Nelson described the struggles that followed. Although the twins had trouble feeding, repeated visits to their doctor saw her reassured her that everything was normal.
After months of "gruelling" appointments, the twins were diagnosed with SMA type 1, a severe muscle disease.
“For those of you that don't know what SMA 1 is, it is the most severe muscular disease that a baby can get. It stands for spinal muscular atrophy, which can affect... Well, it does affect every muscle in the body, down to legs, arms, breathing, swallowing," Nelson said.
"And essentially what it does is, over time, it kills the muscles in the body. And if it's not treated in time. Your baby's life expectancy will not make it past the age of two.”
Nelson said the twins received treatment immediately, as time is critical with SMA. She explained that the condition is not included in the heel prick test that all newborn babies receive at five days old.
It is likely the girls will never walk or fully regain neck strength.
“Thankfully the girls have had their treatment which are so grateful for. If they don't have it, they will die,” she said. Nelson added that she quickly had to learn to care for them on medical equipment at home.
She also stressed the importance of early detection. “If anyone is watching this video and they think they see these signs in their child, then please take your child to the doctor, to the hospital, because time is of the essence. Your child will need treatment and the quicker you get these, the better their life will be,” Nelson urged.
What is SMA Type 1?
SMA is a rare genetic condition that affects the muscles, making them weaker over time. According to the Cleveland Clinic, type 1 SMA (also called Werdnig–Hoffman disease) is the most severe form.
Symptoms appear within the first six months and include weak head control and poor muscle tone. Babies may also have trouble swallowing and breathing.
Without medical support, children with type 1 SMA often do not survive past their second birthday.
There are four other types of SMA, ranging from congenital (type 0), to adult-onset (type 4), with severity and the age of onset varying.
The UK’s National Health Service lists common signs parents can look for as: weak or floppy arms and legs; difficulty sitting, crawling or walking; problems with breathing or swallowing; muscle tremors; and spine or joint problems.
Causes and Inheritance
SMA is caused by changes in a gene called SMN1. This gene produces a protein that motor neurons need to work. Without enough of this protein, motor neurons shrink and die, meaning that the brain cannot control muscles properly.
The severity of SMA depends on another gene called SMN2, which produces a small amount of the same protein.
SMA is inherited in an autosomal recessive pattern, meaning both parents must pass on a mutated SMN1 gene. Carriers usually have no symptoms, but the condition can still appear in their children.
Diagnosis and Treatment
SMA is diagnosed through genetic testing. While there is no cure, treatments can improve quality of life and survival.
These may include breathing support; physical and occupational therapy; help with swallowing or feeding; and mobility aids like braces or wheelchairs.
Since 2016, new FDA-approved medications have changed the outlook for many children. Some medicines, like Spinraza and Evrysdi, help the body make more of the missing protein.
A gene therapy—Zolgensma—can replace the faulty gene in children under two. Early treatment is critical, which is why newborn screening for SMA is now routine in the U.S.
Online Reaction
Social media users and people with SMA shared hopeful and supportive messages beneath the video.
"I have SMA and honestly, though this is such a hard time for you, please know that your girls can still live such a happy and fulfilling life," shared Sophie Bradbury-Cox.
"Jesy, I was diagnosed with SMA at the age of two. Today, I’ve visited 55 countries & all 7 continents in a power wheelchair. Your daughters can have full lives with SMA," shared Cory.
"Sending lots of love and prayers," added TV personality, singer and dancer Jojo Siwa.
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