By Rose Barrett
The family of a 10-year-old girl living with a rare form of epilepsy are on a mission to raise funds so they can adapt their Donaghmede home to meet her needs.
Freya Doyle is one of just four children in Ireland with genetic mutation called STXBP1 which causes a form of epilepsy called Ohtahara Syndrome.
It means she cannot walk, talk, feed or toilet herself and requires round-the-clock care from her doting mum Ciara with the help of her dad and two siblings.
Like most little girls she adores music, loves to play with her sister Laragh, 14, and eight-year-old brother Alfie, and enjoys going to school at St Michael’s House in Baldoyle.
Driving instructor dad Greg told Dublin Gazette: “If she has a bad day or gets upsets at school, the staff know to put on some music, preferably Mumford & Sons and she will calm down.
“Freya now weighs 25.2kg. We really need a bedroom and wet room downstairs and a ceiling track hoist to safely transfer Freya from her wheelchair to shower and into bed.
“It is no longer safe for us and it’s extremely difficult for us to carry Freya upstairs to the bathroom and bedroom. We urgently need structural changes to our family home which we estimate will cost €80-€100,000.”
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The family has been approved for €40,000 from Dublin City Council, but need to raise the rest themselves.
Family friend Tracey Gill set up a Freya’s Fairies GoFundMe page and says any donation no matter how big or small would be gratefully received.
She said: “My son Lochlann grew his hair for two years to 10 inches which he donated to the Princess Trust and the sponsored money to Freya’s fund.
“My sister who had a mastectomy last year also hosted a tennis tournament which raised €1,000 for Freya.”
Ultra marathon runner Mark Conlon from Clondalkin also supported the cause – running 1,500km to win the Last Man Standing challenge in aid of Freya’s cause.
To support visit the GoFundMe here.