{"id":13427,"date":"2024-07-16T11:34:00","date_gmt":"2024-07-16T10:34:00","guid":{"rendered":"https:\/\/www.familyfund.org.uk\/?p=13427"},"modified":"2024-06-26T15:40:43","modified_gmt":"2024-06-26T14:40:43","slug":"west-syndrome-fundraising","status":"publish","type":"post","link":"https:\/\/www.familyfund.org.uk\/news\/west-syndrome-fundraising\/","title":{"rendered":"Dad of child with rare condition challenges himself to help others"},"content":{"rendered":"

For Dad Craig, signing up to the Cardiff half marathon for Family Fund was a very personal challenge. His 13-year-old daughter, Ella started having seizures at five-months-old, was later diagnosed with West syndrome (also known as infantile epileptic spasms syndrome) as well as wider conditions.<\/p>\n\n\n\n

\"Ella<\/figure>\n\n\n\n

<\/p>\n\n\n\n

Craig explains, “We provide all of Ella’s care needs. She can walk, but with difficulty. She has a wheelchair, specialist bed and takes a lot of medication.<\/p>\n\n\n\n

“Ella’s favourite day out would be to go to a football match, where the entire crowd were dogs! She loves football more than I do. We often go to dog shows as a family”.<\/p>\n\n\n\n

Caring for Ella<\/h2>\n\n\n\n

Although Craig has been able to work full-time, his wife, Emma, has found it difficult to hold down a job, due to Ella’s needs. The additional costs that come with Ella’s West syndrome and other needs make it harder to save, or have the money to go away as a family.<\/p>\n\n\n\n

\n

“Emma is now working part-time, but there are lots of additional costs that come with raising Ella. Driving hours to medical appointments, replacing clothing more often, as Ella crawls which wear her clothes down easily. These additional costs make it hard to save, as we tend not to have the money”.<\/p>\n<\/blockquote>\n\n\n\n

A gift of fun family time<\/h2>\n\n\n\n

Dad Craig shares what has helped, “Family Fund has supported us with holidays, which we spend at Haven. They’re lovely, really relaxing places where Ella is entertained and safe. It’s great because our son, Caiden, is happy too. They can have fun together, even if they’re enjoying separate things”.<\/p>\n\n\n\n

\"Craig,<\/figure>\n\n\n\n

“When I was looking at the list of charities I could support for the marathon, I saw Family Fund and it was a no-brainer. Family Fund has helped our family, and we always try to give back to something we’ve benefitted from. It will help other families that need that support too”.<\/p>\n\n\n\n\n

\n \n \n \n\n
\n \n\n

Families like Ella’s need your support<\/h2>\n\n\n\n

To those thinking of taking on a fundraiser for Family Fund, as Craig says, “Don’t think too much about it! If it feels right, put your name down.” Can you help us give a vital grant to a family like Ella’s today?<\/a><\/p>\n\n\n<\/div>\n\n <\/div>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

For Dad Craig, signing up to the Cardiff half marathon for Family Fund was a very personal challenge. His 13-year-old daughter, Ella started having seizures at five-months-old, was later diagnosed with West syndrome (also known as infantile epileptic spasms syndrome) as well as wider conditions. Craig explains, “We provide all of Ella’s care needs. She […]<\/p>\n","protected":false},"author":3,"featured_media":13432,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_oasis_is_in_workflow":0,"_oasis_original":0,"_oasis_task_priority":"2normal","_mixd_wp_review_post_reminders":[],"_mixd_wp_review_date":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[1],"class_list":["post-13427","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"acf":[],"yoast_head":"\nDad of child with West syndrome takes on huge challenge<\/title>\n<meta name=\"description\" content=\"Craig's daughter, Ella, has West syndrome (also known as infantile epileptic spasms syndrome). 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