Kacie-Mai's Story

"Everyone I’ve spoken to about Martin House has only positive things to say and we’re so grateful for all they do for us."

At just two years of age, Kacie-Mai Jones was diagnosed with collagen related muscular dystrophy, a life-limiting condition that leaves her reliant on round the clock care.

“As she’s got older, Kacie-Mai is starting to understand her condition more" says grandad and carer, Craig. "She’s always asking questions, particularly when she sees other children doing things. She wants to know why she can’t climb up there and why she can’t do what they’re doing.”

The family’s visits to Martin House offer the opportunity Kacie-Mai needs to be herself in an environment tailored to her needs. She can meet other children with similar conditions, make the most of the space to play, and enjoy activities with full medical and practical support close at hand:

“The only time we really see Kacie-Mai interact with her peers is when she’s staying at the hospice. She loves teasing the care staff and getting them to do things for her. She’s also really creative so spends a lot of time in the art room painting, cutting, modelling and making little things to bring home.

“She loves the gardens and at our last stay got to try out the new play area. When we took her up there she was straight on the roundabout and she absolutely loved the new wheelchair swing. The only issue was it was so muddy we had to hosepipe her wheelchair before we could go back inside!”

For grandparents Craig and Dawn, Martin House is a lifeline that not only gives them time and space to recharge their batteries, but allows them to feel part of a warm and caring community of likeminded staff and families:

“The hospice is like a different world. For us, we can talk openly to other parents knowing that they understand. Every single person you speak to there understands what you’re going through.

"The whole atmosphere of the hospice is so welcoming and sitting around the table with the other families is such an important part of the experience. Everyone I’ve spoken to about Martin House has only positive things to say and we’re so grateful for all they do for us.”