Amelia’s Story - Keech Hospice Story Amelia’s Story Amelia’s Story Amelia’s condition has changed our world, but thanks to Keech, we’ve found joy, support, and a community where we truly belong. Finding strength in family When our daughter, Amelia, was diagnosed with a rare condition called Nemaline Myopathy Type 2 at just two weeks old, our world turned upside down. It’s a rare genetic disorder, affecting around 1 in 50,000 people, and it meant Amelia faced challenges we’d never imagined. Facing the Unexpected During pregnancy, all we knew was that Amelia had clubfoot. We were unprepared for everything else that came after: a cleft palate, breathing difficulties, and a long seven weeks in the hospital. I tried to stay positive, but nothing could prepare us for the reality of a life-limiting diagnosis. Watching our baby struggle while feeling helpless is something no parent should have to endure. Finding Our Community at Keech We were initially terrified when we heard “hospice.” We thought it meant the end. But Keech opened our eyes. Carly, one of the amazing nurses, visited us and explained everything with compassion. From day one, Keech has been a place of understanding and warmth. We’re not judged or pitied there—just embraced. Our first visit to Keech’s sensory room was transformative. We met families just like ours, where feeding tubes and oxygen tanks are normal. For the first time, I didn’t feel alone. Paul and I have support, and our older daughter, Penelope, has found joy in the play sessions. Keech is more than a hospice; it’s part of our family. Emily, Amelia’s mum Making Every Moment Count Amelia may not hold her head up or crawl like other kids, but her smile lights up a room, and her bond with Penelope is the most beautiful thing. We treasure every giggle and cuddle, every small milestone. Keech has given us memories: family days out, a safe place to play, and the chance to just be a family. We’re determined to give Amelia the most comfortable, love-filled life possible. Even though we know our time together may be short, we focus on making each day special. Our lives have changed in ways we never imagined, but Amelia has brought us a joy we wouldn’t trade for the world. Related Content Kevin’s story Alan and Marian’s story Kirsty’s story Sammi’s story Stephen’s story Dave’s story Evelyn’s story Lily’s story Nicola’s story Joyce’s story David and Gloria’s story Mark’s story Sonia’s story Carole’s story Katie’s Story John’s Story Breanna’s Story David’s Story Heather and Martin’s story Zebby’s story Robin’s story Could you fund an hour of care this year? 70% of our funding comes from people like you. Your gift brings choice, comfort, and expert care to patients and their loved ones when they need it most. £55 funds one hour of specialist care in our in-patient unit. Every donation makes a real difference — could you help today? Donate Stay in touch Sign up to discover more about our work and how we can support you