A Glasgow man says he is “proud” that Scotland will begin screening new born babies for a rare genetic condition.

Scotland will become the first country in the UK to have a national screening programme for Spinal Muscular Atrophy (SMA), which causes progressive muscle wastage and affects movement, breathing and swallowing,

Tony Pearson, whose daughter Grayce was diagnosed with SMA type 2 in early 2024, says news of the pilot programme is “amazing” after campaigning for screening to be introduced.

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He told the Glasgow Times: “After the amount of campaigning we had to do it’s just amazing.

“I feel proud.

“It makes me feel better the fact that Grayce can grow up knowing her Daddy did something for her.”

(Image: Gordon Terris, Newsquest)

Tony and his wife Carrie first became aware something was wrong when Gracye, who will be three in January, stopped moving her legs as much as she had.

After raising their concerns with their GP, they were referred to an SMA specialist who tested Grayce.

Since Grayce was diagnosed, Tony has raised almost £10,000 for SMA UK through fundraising efforts including two Kiltwalks, a raffle and walking from Edinburgh to Glasgow.

Now, all parents will be offered SMA screening for their new born babies through the existing blood spot test at five days old.

The Scottish Government and pharmaceutical company Novartis are funding the two-year programme, which is expected to start in Spring next year, to gather evidence on the test’s effectiveness and build a case for permanent screening.

Tony, 36, commented: “The campaign trail was intense, but this is going to save thousands of babies.

“Without the screening, babies take months or a couple of years to be diagnosed but now if they can treat it [SMA] from birth, they’ll have literally no symptoms at all.”

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After being diagnosed with SMA 2, Grayce started taking medication risdiplam daily, which its hoped will help her start walking by the time she is around five years old.

Tony and Carrie have already seen a difference.

Tony, a support worker, said: “She still can’t stand on her own, but with the gaiters we can get her to stand.

“She’s in a wheelchair now and she’s so independent with it and hopefully in a couple of years’ time we can get her to walk and stand.”

(Image: supplied)

Tony is now hopeful that a similar screening programme will be rolled out across the rest of the UK.

Bob Doris MSP, who has supported Tony throughout his campaigning, says it has been a “privilege” to work with him and Grayce and says testing will change lives.

He said: “I am proud Scotland’s NHS will be the first part of the UK to screen newborn babies for SMA.

“When chaired a briefing from clinicians a few years ago about the benefits of early diagnosis and treatment for babies with Spinal Muscular Atrophy, it just seemed like a no brainer.

“I have championed the cause ever since have repeatedly raised the matter in Parliament.

“However, this success is as much to do with the determination of campaigners such as Tony Pearson and his amazing daughter Grayce.

“It has been a privilege to work with them. I have no doubt this success will change many lives for the better for years to come.”

Neil Gray MSP, Health Secretary, said: “This condition can have devastating impacts for babies and their families, and this investment demonstrates our commitment to early detection through our screening programme.

“I would like to thank SMA UK and all the campaigners across Scotland, including Bob Doris MSP, who have worked so hard to highlight this issue as well as Novartis for their funding.

“By detecting SMA before symptoms develop, screening could allow earlier treatment which could lead to much better life outcomes.

“This investment will contribute towards building the case for making this test permanent and help secure the best possible care and support for babies and families.”