He told the Glasgow Times: \u201cAfter the amount of campaigning we had to do it’s just amazing.<\/p>\n
“I feel proud.<\/p>\n
\u201cIt makes me feel better the fact that Grayce can grow up knowing her Daddy did something for her.\u201d<\/p>\n
(Image: Gordon Terris, Newsquest)<\/p>\n
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.<\/p>\n
After raising their concerns with their GP, they were referred to an SMA specialist who tested Grayce.<\/p>\n
Since Grayce was diagnosed, Tony has raised almost \u00a310,000 for SMA UK through fundraising efforts including two Kiltwalks, a raffle and walking from Edinburgh to Glasgow.<\/p>\n
Now, all parents will be offered SMA screening for their new born babies through the existing blood spot test at five days old.<\/p>\n
The Scottish Government<\/a> 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\u2019s effectiveness and build a case for permanent screening.<\/p>\n Tony, 36, commented: \u201cThe campaign trail was intense, but this is going to save thousands of babies.<\/p>\n \u201cWithout the screening, babies take months or a couple of years to be diagnosed but now if they can treat it [SMA] from birth, they\u2019ll have literally no symptoms at all.\u201d<\/p>\n READ NEXT: TK Maxx broken lift leaves wheelchair-bound disabled tot \u2018stranded\u2019<\/a><\/p>\n 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.<\/p>\n Tony and Carrie have already seen a difference.<\/p>\n Tony, a support worker, said: \u201cShe still can\u2019t stand on her own, but with the gaiters we can get her to stand.<\/p>\n \u201cShe\u2019s in a wheelchair now and she\u2019s so independent with it and hopefully in a couple of years’ time we can get her to walk and stand.\u201d<\/p>\n (Image: supplied)<\/p>\n Tony is now hopeful that a similar screening programme will be rolled out across the rest of the UK.<\/p>\n Bob Doris MSP, who has supported Tony throughout his campaigning, says it has been a \u201cprivilege\u201d to work with him and Grayce and says testing will change lives.<\/p>\n He said: \u201cI am proud Scotland\u2019s NHS will be the first part of the UK to screen newborn babies for SMA.<\/p>\n “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.<\/p>\n \u201cI have championed the cause ever since have repeatedly raised the matter in Parliament.<\/p>\n \u201cHowever, this success is as much to do with the determination of campaigners such as Tony Pearson and his amazing daughter Grayce.<\/p>\n \u201cIt 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.\u201d<\/p>\n Neil Gray<\/a> MSP, Health<\/a> 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.<\/p>\n “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.<\/p>\n “By detecting SMA before symptoms develop, screening could allow earlier treatment which could lead to much better life outcomes.<\/p>\n “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.”<\/p>\n","protected":false},"excerpt":{"rendered":"A Glasgow man says he is \u201cproud\u201d that Scotland will begin screening new born babies for a rare…\n","protected":false},"author":2,"featured_media":201848,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[200,116246,116249,116247,116248,62875,79,9121,78332,116245],"class_list":{"0":"post-201847","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-genetics","8":"tag-genetics","9":"tag-grayce","10":"tag-national-screening","11":"tag-new-born-babies","12":"tag-newborn-babies","13":"tag-rare-condition","14":"tag-science","15":"tag-scotland","16":"tag-spinal-muscular-atrophy","17":"tag-tony-pearson"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/201847","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=201847"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/201847\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/201848"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=201847"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=201847"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=201847"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![\"\"](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2025\/10\/ffc6bf83b0c3f8542b8703ad4c128430.jpeg\"\/)
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