Darlene's Story

Darlene who visits Rainbows Hospice for Children and Young People

Thirteen-year-old Darlene Nkhobwe suffers from Central Core Myopathy, a rare condition which causes muscle wasting and weakness. She was diagnosed when she was two-years-old and in the last few years, her family has relied on the support of Rainbows.

“When she was born, doctors told me that Darlene had low muscle tone and that she had some form of Muscular Dystrophy, they just had to determine what type it was,” said mum Lizzy. “When we had the diagnosis, it wasn’t a huge shock to me as I knew there was something wrong but it was still something I had to get used to.”

Darlene has been in a wheelchair since she was five-years-old. “It was difficult seeing her in it when she was so tiny but we adjusted to it,” said Lizzy. “I am just so thankful that she isn’t in any pain.”

Darlene is unable to do tasks like dressing herself as she has limited arm movement and she gets very tired very quickly. “She copes so well because it is all she has ever known,” said Lizzy. “She understands more and more about her condition as she is growing up. She is a very good girl. She has a lot of friends and she loves going to school at Nottingham University Samworth Academy.”

Lizzy, who had to stop working to become Darlene’s full-time carer, discovered our hospice four years ago. 

“Rainbows is a Godsend,” she said. “It is just a beautiful place and Darlene loves it. If she could go every weekend, she would. She just loves everything about it, especially swimming. The Hydrotherapy Pool at Rainbows is the only place she can go swimming because everywhere else is just too cold for her.

“I don’t stay with her at Rainbows because she likes to be on her own. It is independence for her and it is also nice for me to have a break. I know that she is safe and well looked after. She loves it and that is very comforting.

 “We don’t know what the future holds and I just don’t think about it. Thinking about it would depress me so we just live and enjoy every day.”

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