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.
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.
Help fund our care
We believe specialist end-of-life care should be FREE and available for everyone across Bedfordshire, Hertfordshire, and Milton Keynes.
By donating today, you can ensure Keech is there for you, your family and community when you need us most.
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