Uttoxeter<\/a>, told StokeonTrentLive: \u201cThey kept insisting there was nothing wrong with him and then they finally did a test and it came back with this. We\u2019d never heard of it, like I\u2019m sure many others haven\u2019t either.<\/p>\n\u201cIt\u2019s a life-limiting condition, so finding out was absolutely traumatic. There are no genetic conditions in our family histories that we\u2019re aware of, so it was a complete shock. We thought he just had dyspraxia. So for the doctors to turn around and reveal it was something so severe was just heart-breaking.<\/p>\n
\u201cFor at least six months after the diagnosis, we were very numb. It was so hard to take in. Now our focus has changed from the shock of it to just doing our best for him. At the moment, that\u2019s getting our hands on this drug.\u201d<\/p>\n
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Jessica and Ashley say givinostat – a new drug released in the UK last December – could slow the progression of the disease by \u2018two-to-five years\u2019.<\/p>\n
The experimental treatment is available under certain NHS trusts via an early-access programme. But University Hospitals of Birmingham NHS Foundation Trust (UHB) is not taking part – meaning Jackson is unable to get the medication.<\/p>\n
\u201cI just think it\u2019s cruel,\u201d Jessica said. \u201cThere are so many facilities and support options available for people who have issues stemming from drug abuse and gambling. Things that people might not have consciously chosen, but things they chose nonetheless. Our son didn\u2019t have a choice in this condition. He was given it unfairly. He was born with it and there\u2019s nothing for him.<\/p>\n
\u201cWhen you know there\u2019s something that could give your son a few extra years and you can\u2019t get it for him, it\u2019s extremely difficult to handle. It\u2019s horrible to think that it\u2019s completely in somebody else\u2019s hands. It makes you feel powerless.<\/p>\n
\u201cI just want them to listen to us. I understand that every NHS trust has only so much money allocated to it each month and they have to make hard decisions as to which departments to give it to. But they\u2019re not taking parents’ feelings into account.\u201d<\/p>\n
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University Hospitals of Birmingham NHS Foundation Trust has not responded to StokeonTrentLive’s repeated requests for a statement.<\/p>\n
But an NHS spokesperson said: “A select number of trusts offer the treatment via a company-led Early Access Programme but it seems UHB is not one of these. Givinostat is not approved for Duchenne\u2019s muscular dystrophy in the UK. Some boys in the UK took part in givinostat clinical trials and it is currently being assessed by Britain\u2019s regulators: the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence (NICE). If NICE recommends givinostat, then it will be available through the NHS in England, Wales and Northern Ireland.”<\/p>\n
Sign up for the latest breaking news and top stories from StokeonTrentLive on WhatsApp<\/strong><\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"Jackson Campion is the latest victim of the NHS postcode lottery The desperate parents of a disabled child…\n","protected":false},"author":2,"featured_media":223690,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4315],"tags":[105,4326,211,16,15,35610],"class_list":{"0":"post-223689","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-health","9":"tag-medication","10":"tag-nhs","11":"tag-uk","12":"tag-united-kingdom","13":"tag-uttoxeter"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114766051063494023","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/223689","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=223689"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/223689\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/223690"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=223689"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=223689"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=223689"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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