\n Jack Thomas, from St Athan, suffers from a unique mutation of the PPFIPP1 gene, which causes drug-resistant seizures, developmental delays, and blindness.\n<\/p>\n
\n The condition is so rare that it does not have a name, and Jack is the only known patient in the UK, with only 15 other children diagnosed worldwide.\n<\/p>\n
\n His mother, Amanda, said: “Jack is so special.\n<\/p>\n
\n “He has overcome so many odds since his birth, and we are so grateful for each day we have with him.\n<\/p>\n
\n “When you have a child with a serious health condition, it is such a worry and reassuring to know that Wales Air Ambulance is there if needed.”\n<\/p>\n
\n The family have pledged to raise as much as they can for the Wales Air Ambulance.\n<\/p>\n
\n She said: “We are just so grateful for everything the service has done for us over the past few months.\n<\/p>\n
\n “It\u2019s important for us to give back as much as we can.”\n<\/p>\n
\n Jack has needed the service’s help multiple times, after suffering prolonged seizures.\n<\/p>\n
\n Jack’s family raised almost \u00a31,000 (Image: Wales Air Ambulance)\n<\/p>\n
\n The Welsh Ambulance Service has attended to Jack on eight occasions since September last year, and Wales Air Ambulance clinicians provided support to ambulance crews on three of those occasions.\n<\/p>\n
\n He has spent more than 60 nights in hospital since his birth and needs care 24\/7.\n<\/p>\n
\n To raise money for the service, Jack’s parents organised a Coffee and Cake event in March for the charity’s 24th anniversary.\n<\/p>\n
\n Ms Thomas said: “Our brilliant family and friends all pitched in.\n<\/p>\n
\n “They were baking, making cups of tea and coffee, and helping on the day.\n<\/p>\n
\n “We managed to raise almost a thousand pounds, which is a fantastic amount.”\n<\/p>\n
\n Gail Windley, regional fundraising manager for Wales Air Ambulance, said: “It was wonderful to have the opportunity to meet the Thomas family after their incredible Coffee and Cake event in aid of our lifesaving service.\n<\/p>\n
\n “We are hugely grateful to Amanda and Nick for raising funds for us during what has been an incredibly difficult year for the whole family.”<\/p>\n","protected":false},"excerpt":{"rendered":"Jack Thomas, from St Athan, suffers from a unique mutation of the PPFIPP1 gene, which causes drug-resistant seizures,…\n","protected":false},"author":2,"featured_media":236413,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3846],"tags":[267,70,16,15],"class_list":{"0":"post-236412","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-genetics","8":"tag-genetics","9":"tag-science","10":"tag-uk","11":"tag-united-kingdom"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114792891882255113","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/236412","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=236412"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/236412\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/236413"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=236412"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=236412"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=236412"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}