{"id":480713,"date":"2026-06-03T09:46:13","date_gmt":"2026-06-03T09:46:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/480713\/"},"modified":"2026-06-03T09:46:13","modified_gmt":"2026-06-03T09:46:13","slug":"i-cant-lose-him-he-is-all-i-have-left-cork-father-begging-for-drug-for-disease-affecting-son","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/480713\/","title":{"rendered":"‘I can\u2019t lose him. He is all I have left’: Cork father ‘begging’ for drug for disease affecting son"},"content":{"rendered":"

A Cork father is pleading with the Government to fund life-changing medicine for a rare disease that has already caused the death of one of his two sons.<\/p>\n

Craig Coady, who lives in Buttevant lost his son Rory, 13, last September to Friedreich\u2019s ataxia<\/a>, a rare genetic disorder which causes progressive damage to the nervous system and can lead to heart complications. <\/p>\n

His older son Paudie, 16, also has the condition, and is starting to deteriorate.<\/p>\n

Mr Coady told the Fianna F\u00e1il parliamentary party last week that his wife, Della, has Huntington\u2019s disease and is now receiving treatment in Dublin.<\/p>\n

\u201cIt is only two of us left at home from a family of four,\u201d he told the meeting.<\/p>\n

\u201cI am begging the Government, the HSE, and [drug company] Biogen, please get together. I can\u2019t lose him. He is all I have left.\u201d<\/p>\n

Skyclarys, the drug for treating Friedreich\u2019s ataxia, is not available in Ireland.\u00a0<\/p>\n

The National Centre for Pharmacoeconomics (NCPE) said in December that it would not recommend that the HSE provide it because it was \u201cpoor value for money\u201d, and it was \u201cunsure based on the available clinical evidence\u201d on the \u201cmeaningful improvements\u201d it could have.<\/p>\n

Mr Coady told the Irish Examiner the drug could help improve Paudie\u2019s quality of life.<\/p>\n

\n Every night, he always gives me a hug and a kiss. I feel that he’s just worried that he’s not going to wake up in the morning, the same as Rory.\n <\/p>\n

Paudie was diagnosed with Friedreich\u2019s ataxia in 2023 after his dad noticed that he was a \u201cbit off balance\u201d while playing a match.<\/p>\n

The doctors recommended testing Rory for the condition, despite him not displaying any symptoms.<\/p>\n

A year after Paudie\u2019s diagnosis, the Coady family was told that Rory also had Friedreich\u2019s ataxia, and that the lower left muscle in his heart had thickened.<\/p>\n

One Saturday in September 2025, he played a football match for Buttevant Soccer Club and \u201chad a great game\u201d.\u00a0<\/p>\n

He got fish and chips, which were his \u201cfavourite treat\u201d, watched Manchester United play Chelsea, played PlayStation with his friends, and went to bed with his headphones on.<\/p>\n

He got a \u201cmassive heart attack in the middle of the night\u201d and on September 21, 2025, died aged 13.<\/p>\n

\"PaudiePaudie and Rory Coady.<\/p>\n

Mr Coady is now watching Paudie\u2019s condition deteriorate.\u00a0<\/p>\n

He will start his Junior Certificate exams on Wednesday and will travel to Lanzarote on holiday next month.\u00a0<\/p>\n

While he did not need a wheelchair last year, he will this year as he is having difficulty walking.<\/p>\n

Paudie is also becoming increasingly fatigued, something that has urged his dad to campaign for Skyclarys to be approved for use in Ireland.<\/p>\n

He is due to meet Taoiseach Miche\u00e1l Martin next week in Cork, where he says he wants \u201cstraight answers\u201d rather than \u201cbluff words\u201d.<\/p>\n

When asked what he will say to the Taoiseach, Mr Coady replied: \u201cIf it was one of your own, Miche\u00e1l, what would you do?\u201d<\/p>\n

He said it is \u201creally frustrating\u201d to know that Skyclarys is not available in Ireland when it is accessible to patients in other European countries, including France, Germany, Portugal, and Spain.<\/p>\n","protected":false},"excerpt":{"rendered":"A Cork father is pleading with the Government to fund life-changing medicine for a rare disease that has…\n","protected":false},"author":2,"featured_media":480714,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[11246,79,61,60,43],"class_list":["post-480713","post","type-post","status-publish","format-standard","has-post-thumbnail","category-ireland","tag-childrens-health","tag-cork-news","tag-ie","tag-ireland","tag-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/480713","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=480713"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/480713\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/480714"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=480713"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=480713"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=480713"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}