For Sophie’s parents, the importance of building a hospice in Liverpool is deeply personal. They have experienced first-hand the difference Claire House has made to their ten-year old daughter, providing care, support and opportunities that have helped the whole family to navigate the challenges of Sophie’s serious medical condition.

“Sophie is such a sassy little girl,” says mum Pearl. “But she has a lot of physical and medical challenges.”

Sophie was born with Infantile Spinal Muscular Atrophy (SMA), a rare genetic condition that causes muscle weakness. This means Sophie is unable to walk and uses a wheelchair, as well as requiring 24-hour care.

Much of her early childhood was spent in hospital, leaving the family isolated and exhausted.

“We found we didn’t have much support. Sophie couldn’t go to nursery like other children, so she was always with us” explains Pearl.

However their world widened when Sophie was referred to Claire House.

“It doesn’t just support Sophie - it supports all of us as a family. It gives us somewhere to turn, somewhere to breathe, somewhere to feel understood, and somewhere to make precious memories together.”

Claire House also offers short respite stays at hospice on the Wirral, but the distance from home and Alder Hey makes Sophie’s family anxious about being so far away. As a result, they feel unable to take advantage of the overnight support that could make such a difference to their wellbeing.

A fully operational hospice in West Derby close to Alder Hey hospital, would mean families in Liverpool will no longer have to choose between accessing specialist care or staying close to home - something Mark feels passionately about.

“This is a new chapter in the Claire House story,” he explains. “One that could bring essential support close to even more children and families who desperately need them. But for this dream to become a reality, money is needed.

“The challenge of creating this is very real. The people behind Claire House work tirelessly to support families like ours, but they need our help to reach other families who are currently missing out.”