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Visit the charity's profileJust over two years ago, in April 2021, Caitlin was diagnosed with Friedreich's Ataxia, a rare genetic condition that affects mobility, balance, fine and gross motor skills, speech, eyesight, hearing, heart function and the endocrine system. The incurable condition is degenerative and life-limiting.
After Caitlin’s condition was diagnosed, her family were struggling to come to terms with the devastating news. Emma didn’t know where to turn, so when she found a Facebook group for Mums, she posted about how lost she was feeling and thankfully another Mum got in touch to say that her son was being supported by Dougie Mac. After a bit of research, Emma made a self-referral to Dougie Mac’s children’s services.
Emma explains, “Initially we weren’t sure what to expect from a hospice, but one of the Care Coordination team members came to visit us at home and brought pictures of the hospice and told us what it was like. Since we started accessing the hospice they’ve also done a video tour which is an amazing idea to put people at ease.”
Over the last couple of years the whole family has been able to access Dougie Mac’s services. “Caitlin generally spends a day per month at the hospice, which allows her to be in charge of what she wants to do and gives her the opportunity to just be a child.
She also gets ten overnight respite stays per year, which enable her, and us, to just have a break.
“We’re all supported by the counselling team and attend family events run by the hospice. My husband also attends the dedicated men’s support group".
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