17/06/2026
“We felt the same apprehension - opening up to strangers, accepting help from an organisation whose name has connotations at odds with our situation felt counter-intuitive – but what we found was that hospice also stands for laughter, new experiences, support and friendship. And that’s been invaluable for all of us.”
Blake is eight and lives with an extremely rare condition called HNRNPH2, affecting her ability to walk and talk. She uses a wheelchair, needs specialist equipment and care, and lives with epilepsy, with seizures that can come on “like the flick of a switch.” Despite this, Blake’s personality shines through, she loves music, being tickled, and watching the world go by.
It took years of uncertainty before Blake’s family finally got a diagnosis. By then, the challenges of caring for her complex needs, alongside supporting her sisters, had stretched them to the limit.
At first, the idea of a hospice felt daunting. But everything changed when they found Julia’s House. Taking time to truly understand Blake - her needs, her quirks, the things that make her laugh, the team created a safe, joyful space where she can thrive.
“Blake has a whale of a time at the hospice,” says her dad Mark. From music sessions and sensory baths to time in the garden, she’s been encouraged to explore, develop and interact in ways her family once thought might not be possible, even learning to use an Eye Gaze computer to communicate.
And it’s not just Blake, Julia’s House supports the whole family. Giving her parents time to recharge, helping her sister Bella connect with other young carers, and bringing moments of light into what can often feel like a very long month.
This , we’re sharing Blake’s story. You may also recognise her as one of the families featured in our ‘What is Julia’s House?’ film this week.
👉 Read Blake’s full story and support families like hers: https://ow.ly/jJgP50ZbMfw
Your support this Children’s Hospice Week helps families like Blake’s find strength, support and time together when they need it most. 💜
