Riley’s story

Riley was born with a rare chromosomal genetic condition that shapes every aspect of his life. He has extremely limited mobility, relies on a wheelchair, is tube fed, and is non-verbal. His needs are complex and constant, but to his mum, Shailza, he is simply Riley.

“I don’t see Riley as his disability. I just see my child. This is the only life we’ve ever known.”

From the very beginning, Shailza’s world has revolved around appointments, prescriptions, feeding schedules and care plans. She is on call 24 hours a day, seven days a week. Wherever Riley is, her phone is on, charged, and close by.

Since 2017, Riley and his older brother Stanley accessed support from the hospice through a self-referral. What began as a step into the unknown, soon became something far more meaningful, a place of care, comfort and community.

Today, Riley attends the hospice regularly. He enjoys day care, hydrotherapy, music therapy, and one of his absolute favourites, the Family Fun Days.

“As soon as we arrive at the gates, Riley starts giggling to himself with enjoyment. He knows exactly where he is.”

Now nearly 13 and dependent on constant medical equipment, taking Riley out into the wider world can be challenging. Events that many families take for granted require careful planning and carry real risks. But at the hospice, everything changes.

Riley’s mum, Shailza says…

“The Family Fun Days are incredible. It’s an opportunity for Riley to enjoy these celebrations in a safe environment, just like any other child would. The hospice brings all the fun into one place. And for me, it’s also a chance to meet other families who just understand.”

There’s something magical about the Spring, Summer and Christmas Fun Days. The laughter, the activities, and the shared understanding between parents who don’t need to explain the complexities of their lives.

But the hospice is more than activities and respite. It has also become a place of remembrance and care.

In 2022, Riley’s brother Stanley died from the same condition. Through it all, the hospice has continued to support the family. They now attend annual remembrance events in the summer and winter.

“The remembrance events are not just a time to stop and remember Stanley. They’re an opportunity to be with other families and remember I’m not alone. Together, we will always carry them in our hearts.”

“For me, the hospice brings me peace of mind and a small opportunity to have a break. It’s an environment where I know I can trust the staff and have a moment to switch off.”

In a life defined by constant care, that trust means everything.

For Riley, the hospice is a place to relax, to be stimulated in new ways, to connect with other children, and to enjoy the activities he loves most. And for Shailza, it is a lifeline, a community, and a space where her son is seen not for his condition, but for the joy he brings.