\n<\/p>\n
W<\/span>hen Billy Caldwell was a baby he was not expected to survive infancy. A severe form of epilepsy condemned his tiny body to daily seizures \u2013 brutal, draining and each one potentially fatal. \u201cThey couldn\u2019t get the seizures under control,\u201d his mother, Charlotte, recalled. \u201cBilly was sent home to die \u2013 we were told he wouldn\u2019t see past his first birthday.\u201d<\/p>\n That prediction was in 2005. Last month Billy, who is autistic, celebrated his 21st birthday at home in a bucolic corner of Northern Ireland with family, friends, cake and a wide smile.<\/p>\n <\/span>Billy Caldwell celebrates his 21st birthday at home in Northern Ireland.<\/span> Photograph: Charlotte Caldwell<\/p>\n He is alive and free of seizures, and is something of a celebrity: the boy who helped to legalise cannabis-based medicine in the UK. The Caldwell family achieved a political and medical milestone in 2018 that facilitated his survival and enabled cannabis-based treatments for other patients.<\/p>\n \u201cIt was something I didn\u2019t even dare dream about,\u201d Charlotte said this week from the family home in Castlederg, County Tyrone. \u201cIt\u2019s beyond words that Billy has reached 21. He\u2019s not just surviving, he\u2019s thriving.\u201d<\/p>\n Billy is able to walk and relishes trips to the sea, she said. \u201cHis balance has become really good; he can go up and down steps for the first time. And he loves the beach, even in winter.\u201d<\/p>\n <\/span>Billy Caldwell walks on a beach in Northern Ireland.<\/span> Photograph: Charlotte Caldwell<\/p>\n It is an upbeat outcome to a story that for many years was marked by anguish.<\/p>\n Billy survived infancy and made it into boyhood with a cocktail of drugs but the disease still raged inside his body, at times inflicting hundreds of seizures per day, said Charlotte. \u201cHe was completely depleted. He was being tube fed. He couldn\u2019t stand up.\u201d<\/p>\n When the cocktail stopped working Charlotte took her son in 2010 to a specialist in Chicago who tweaked and refined treatment, including a change to his diet, which helped to control the seizures.<\/p>\n Then in June 2016, when Billy was almost 11, the seizures returned \u201cwith a vengeance\u201d, prompting the family to return to the specialist, who had relocated to Los Angeles. After diagnostic tests, he referred Billy to a medical cannabis expert.<\/p>\n After treatment with cannabidiol (CBD), a chemical produced by the cannabis plant that does not get you high, Billy\u2019s symptoms eased.<\/p>\n The Caldwells returned in 2017 to Northern Ireland, where a family GP prescribed further doses until May 2018 when the NHS told him to stop. Under UK law, a prescription for cannabis-based treatment needed to be based on clinical trials.<\/p>\n With Billy\u2019s medicine running out, the Caldwells flew to Toronto, Canada, where a paediatric neurologist who was running clinical trials prescribed CBD for Billy. When the family returned to the UK, customs officials at Heathrow airport confiscated the medicine.<\/p>\n \u201cThat was on the Monday; by Wednesday Billy had his first seizure,\u201d said Charlotte. \u201cOn Friday morning he had a prolonged seizure and was blue-lighted to Chelsea children\u2019s hospital in an ambulance. They treated him with hands tied behind their back because Billy\u2019s medicine was in the vaults of the Home Office two-and-a-half miles down the road.\u201d<\/p>\n Amid a public outcry the Conservative government granted the family a licence for cannabis oil to treat Billy. Weeks later the government accepted evidence of therapeutic benefit for some conditions and announced a relaxation of laws governing access to cannabis-derived medicine.<\/p>\n Billy, the symbol of the breakthrough, returned home to Northern Ireland and received treatment on the NHS, for which the family is grateful.<\/p>\n The seizures abated and disappeared, said Charlotte, except for a week in 2023 during a temporary supply glitch. Billy has had no seizures since. \u201cPrescription cannabis has not only given me back my right as a mummy to hope, but more importantly has given Billy his right back to life,\u201d said Charlotte.<\/p>\n <\/span>Charlotte and her son Billy Caldwell at a park in London.<\/span> Photograph: Charlotte Caldwell<\/p>\n However, NHS prescriptions are severely restricted, forcing many patients into a private system that is expensive and inconsistent, said Charlotte. She has founded an advocacy group, Transparent Responsible Adult-Use Controlled Data (TRACD), to lobby for change.<\/p>\n Charlotte remains grateful for what she has. \u201cBilly is still here, he\u2019s still alive. That\u2019s my drive. I couldn\u2019t wish for anything better. I\u2019m just happy.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" When Billy Caldwell was a baby he was not expected to survive infancy. A severe form of epilepsy condemned his tiny body to daily seizures \u2013 brutal, draining and each one potentially fatal. \u201cThey couldn\u2019t get the seizures under control,\u201d his mother, Charlotte, recalled. \u201cBilly was sent home to die \u2013 we were told he<\/p>\n","protected":false},"author":1,"featured_media":51894,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[25209,2866,1855,3156,37,7623,1403,23373,8015,13764,8878],"class_list":{"0":"post-51893","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-billys","9":"tag-boy","10":"tag-cannabis","11":"tag-familys","12":"tag-health","13":"tag-helped","14":"tag-joy","15":"tag-legalise","16":"tag-medicine","17":"tag-thriving","18":"tag-turns"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/51893","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=51893"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/51893\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/51894"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=51893"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=51893"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=51893"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}