ALL babies in England will get free NHS tests for the muscle wasting disease suffered by Jesy Nelson’s twins following a campaign by the Little Mix star.
In a breakthrough rule change, screening for spinal muscular atrophy will be added to the newborn blood spot test from October.
Little Mix star Jesy Nelson out campaigning in London Credit: DIGITAL/EROTEME.CO.UK
Jesy with twin daughters Ocean and Story, who both suffer from spinal muscular atrophy Credit: Unknown
It comes after Jesy, 35, revealed both her daughters, Ocean and Story, have the genetic condition and urged ministers to start routine testing.
She said yesterday: “It means so much to see the heel prick test for SMA being rolled out. Today is a day of hope and this is something I’m incredibly proud to have supported.
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“This is a victory for every family affected by SMA.”
Diagnosing the condition in infancy helps doctors treat it before nerves and muscles are damaged beyond repair.
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Effective drugs are available on the NHS but should be given before symptoms start if they are to halt the condition.
Screening is already routine in Scotland. In England it will come in over 12 months.
The Welsh Government is awaiting advice from the UK National Screening Committee.
The condition, affecting about 50 babies per year, can cause severe disability and shorten life expectancy.
Early symptoms in infants include weak or floppy arms and legs, twitching or shaking, or problems breathing.
Giles Lomax, chief of the charity SMA UK, said: “After years of campaigning, this is a hugely important step forward.”
The Department of Health hopes pharmaceutical companies will help fund the £5million costs.
Health Secretary James Murray said: “No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference.
“This expansion means babies across England will have the best possible chance of a healthy life.”
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
Type 1 is diagnosed within the first six months of life and is usually fatal.
Type 2 is diagnosed after six months of age.
Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.
It affects around 1 in 11,000 babies.
