{"id":399296,"date":"2026-03-23T06:50:13","date_gmt":"2026-03-23T06:50:13","guid":{"rendered":"https:\/\/www.europesays.com\/ie\/399296\/"},"modified":"2026-03-23T06:50:13","modified_gmt":"2026-03-23T06:50:13","slug":"scotland-becomes-first-part-of-uk-to-screen-babies-for-rare-muscle-disease-the-irish-news","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/ie\/399296\/","title":{"rendered":"Scotland becomes first part of UK to screen babies for rare muscle disease \u2013 The Irish News"},"content":{"rendered":"

Scotland has become the first part of the UK to screen babies for a rare condition that causes progressive muscle wastage in a move parents have described as a \u201cgame-changer\u201d.<\/p>\n

Spinal muscular atrophy (SMA) can result in muscle weakness, breathing and swallowing issues and a loss of mobility in children.<\/p>\n

If caught early, the most devastating effects of the condition can be avoided.<\/p>\n

On average, three to four babies a year are born with SMA in Scotland.<\/p>\n

\"Victoria<\/a>\"BP<\/a><\/p>\n

All parents will now be offered SMA screening for their newborns through the existing blood spot test which is taken around day four after birth.<\/p>\n

Tony and Carrie Pearson\u2019s daughter Grayce was around six months old when she stopped being able to move her legs and began losing her strength.<\/p>\n

After several referrals, doctors in 2024 confirmed it was SMA type two. Since then, the parents have been campaigning for a national screening programme.<\/p>\n

Carrie told the Press Association: \u201cWe wish it came out sooner, obviously, but we are grateful now that every other child isn\u2019t going to go through all those issues.<\/p>\n

\"TonyTony and Carrie Pearson with their daughter Grayce <\/p>\n

\u201cThey\u2019re going to get treatment sooner and be able to meet their milestones, and all families aren\u2019t going to have to go through that anxiety and stress that we did, and other families went through.\u201d<\/p>\n

She said it was \u201conly logical that the rest of the UK falls behind\u201d Scotland before adding: \u201cCan you really put a price on a child\u2019s life?\u201d<\/p>\n

Tony said the pilot is \u201chistory being made in Scotland\u201d. He went on: \u201cIt\u2019s \u00a34 to test a baby for SMA. Is a child\u2019s life worth \u00a34? Definitely.\u201d<\/p>\n

He said he hoped the rest of the UK would follow Scotland, adding: \u201cIt\u2019s a gamechanger.\u201d<\/p>\n

\"AllAll newborn babies in Scotland will have the chance to be tested for spinal muscular atrophy (Danny Lawson\/PA) <\/p>\n

Dr Sarah Smith, director of the screening laboratory in Glasgow where all the tests will be conducted, said the aim of the pilot was to reveal whether a baby has SMA before they showed any symptoms and before any muscle wastage took place.<\/p>\n

The lab, next to the Queen Elizabeth University Hospital, already screens for 10 disorders and the new scheme would add SMA to that list.<\/p>\n

Dr Smith said: \u201cIt will mean these babies are picked up pre-symptomatically.<\/p>\n

\u201cWith SMA, unfortunately, once the symptoms are present, you can\u2019t easily reverse them. Our aim is to stop the symptoms from actually happening in the first place.<\/p>\n

\"Three-year-oldThree-year-old Grayce Pearson was diagnosed with spinal muscular atrophy in early 2024 <\/p>\n

\u201cSo, we\u2019ll be able to pick up the baby as having SMA pre-symptomatically, and we\u2019ll be able to put them on treatment, and then hopefully they won\u2019t present with some of the symptoms that this disease can have, so they\u2019ll have a much better quality of life.\u201d<\/p>\n

Former Little Mix star Jesy Nelson has campaigned for all babies to be tested for SMA, after disclosing her twins, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with the rare condition.<\/p>\n

In February, she announced she had become a patron of SMA UK and urged her fans to donate to the charity, which aims to improve the lives of people with the condition.<\/p>\n

Giles Lomax, chief executive officer of SMA UK and the father of twins living with SMA, said the Scottish pilot project was a \u201chuge moment for the SMA community\u201d, who he said have been campaigning for newborn screening for a decade.<\/p>\n

He added: \u201cWith all three treatments now routinely available through NHS Scotland alongside newborn screening, the future for anyone diagnosed with SMA is very different compared to their peers who were diagnosed symptomatically.<\/p>\n

\"HealthHealth Secretary Neil Gray said the screening programme could be \u2018life-changing\u2019 (Robert Perry\/PA) <\/p>\n

\u201cThese babies will now have the opportunity to grow up without lifelong health care needs and the complexity and challenges of living with SMA.\u201d<\/p>\n

The two-year scheme is being funded by the Scottish Government, which will provide \u00a395,000, and the pharmaceutical company Novartis, which will provide \u00a3435,000.<\/p>\n

Health Secretary Neil Gray said: \u201cSMA can have devastating implications for babies and their families, and this investment demonstrates our commitment to early detection through our screening programme.<\/p>\n

\u201cI thank SMA UK and local campaigners who have worked so hard to highlight this issue, and Novartis for its funding.<\/p>\n

\u201cBy detecting SMA before symptoms develop, screening could allow earlier treatment which could be life-changing and help secure the best possible care and support for babies and families.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Scotland has become the first part of the UK to screen babies for a rare condition that causes…\n","protected":false},"author":2,"featured_media":399297,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[78],"tags":[3914,18,27687,135,19,17,181281,5,166065,790,181282,23550,53567,1294],"class_list":{"0":"post-399296","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-children","9":"tag-eire","10":"tag-glasgow","11":"tag-health","12":"tag-ie","13":"tag-ireland","14":"tag-neil-gray","15":"tag-news","16":"tag-nhs-scotland","17":"tag-politics","18":"tag-queen-elizabeth-university-hospital","19":"tag-scotland","20":"tag-spinal-muscular-atrophy","21":"tag-uk"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/116277164730707671","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/399296","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=399296"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/399296\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/399297"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=399296"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=399296"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=399296"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}