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• Jesy Nelson

Babies across England will now be tested for Spinal Muscular Atrophy, or SMA, this rare but serious genetic condition that can’t be reversed once symptoms start to show and can become fatal if left undiagnosed. Jesy Nelson has been an outspoken advocate for the condition since the start of this year as her own twin daughters were diagnosed.

The former Little Mix start has been adamantly campaigning for SMA to be included in the heel prick test that newborns are given, which can diagnose babies before any symptoms start and “save their legs”. Now, the Department of Health and Social Care has confirmed that a newborn screening programme for SMA will be rolled out in England from October.

SMA is caused by a genetic mutation in the SMN1 gene. This affects a specific nerve cells in the spinal cord that controls muscle movement.

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Without this cell, muscles don’t receive the nerve signals needed to move which causes them to weaken and waste away over time, or atrophy. Once a muscle starts to atrophy, it usually can’t be fully restored.

According to the NHS, common symptoms include:

• Muscle weakness, such as floppy or weak arms and legs
• Movement problems, such as difficulty sitting up, crawling or walking
• Problems with breathing or swallowing
• Twitching or shaking muscles, known as tremors,
• Bone and joint problems, such as an unusually curved spines

Jesy has also urged parents to look out for other, lesser-known symptoms like “floppiness”, frog-like legs that don’t move much, bell-shaped bellies and rapid breathing.

The singer’s twins were born prematurely so when her mum started raising concerns about their lacking leg moment, Jesy figured it was nothing more than the expected complications for premature twins.

However, when they started struggling to feed she started questioning the doctors but was dismissed. It took months of hospital visits and tests for the twins to be diagnosed and treated.

SMA is a progressive condition with no cure but there are treatments available to help manage the symptoms. Jesy has been candid with her following about the difficulties her children face because of the condition and the medical support they will need for the rest of their lives because of their muscles that have atrophied.

Jesy previously shared: “I feel like I’ve become a nurse…I have to put them on breathing machines and do stuff no mother should have to do on their child. If I can raise as much awareness of this as possible and the signs, then something good has to come out of this.”

There’s four types of SMA, classified by what age a person starts experiencing symptoms. Type 1, which is what Jesy’s children were diagnosed with, appears in babies before the age of six months while type 4 starts in adults over the age of 18. SMA is usually more severe the earlier symptoms begin.

Treatment depends on how severely the patient is affected but can range from physiotherapy and stretching to back surgery, braces and feeding tubes.