Eight-year-old Carmela lives in Wiltshire with mum Lucy, dad Darren and assistance dog Tinker. She has a very rare form of muscular dystrophy (LMNA Congenital Muscular Dystrophy) which affects one in every million babies.
“It’s a progressive muscle-wasting, life-shortening condition which gradually weakens her skeletal muscles as well as her heart and respiratory muscles. It’ll get to the point where I’ll have to help her 24/7, and we know that the impact on her heart and respiratory system will impact her life expectancy”.
Grants to make memories
“We’ve been able to get family breaks grants every year for the last few years. It’s something we really look forward to. To be able to spend that time together is very special and we’ve been able to make memories that we’ll treasure.”
“The absolute highlight of the trip is swimming. Carmela will often wake up sore and achy, which is a constant reminder of her condition. Swimming in warm pools is very soothing for her muscles (at lots of the pools near us, the water is too cold).
“Not only that, it’s the only time she can do something on her own and really feel free. I don’t have to help her, she can do her own thins. It’s so lovely for her to have that freedom.
“As my muscles get weaker and tighter, everyday I feel pain and discomfort. And there are less physical activities I’m able to do. It also makes me sad sometimes, so having this break really helps me because I’m able to have fun and take part without any pain.”
“Hydrotherapy is one exercise I will be able to do even when I’m weaker, so swimming in hot water helps to relax my body, loosen my muscles for stretching and allows me to do movements I’m unable to do on land.”
Lucy adds: “Living with LMNA congenital muscular dystrophy is a real emotional rollercoaster. It’s so up and down all of the time. We’re trying to keep Carmela as strong as possible. She has countless appointments to check her muscles and joints, and she has to spend a lot of time doing therapy and stretching.
“Despite this, Carmela is such a joy to be around. She has a real zest for life and a fantastic sense of humour. She loves make people laugh and is just a ray of sunshine. The grants from Family Fund have been amazing and have given Carmela fun and freedom.”
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