Carmela aged 9 from Wiltshire has a rare form of Muscular Dystrophy called LMNA Congenital Muscular Dystrophy. It means her skeletal muscles, heart and lungs weaken as she grows, potentally shortening her life. With her type of MD, her heart is at risk of a sudden heart attack with no warning so is due to have a linq cardiac monitor inserted under the skin near the heart to pick up any early warning irregularity signs.

There is no treatment or cure for Carmela's condition but to help give her a better tolerance of the regular pain and discomfort as her muscles progressively waste away, having weekly physio is really beneficial to Carmela's quality of life. Regular therapy breaks help with Carmela's mental health as her emotions are up and down so regularly due to the ever-changes in her condition.

She has daily pain in some joints that are tight due to lack of muscle but she doesn't complain and just gets on with it. She has weak upper and lower body, wears a lycra suit under her clothes for extra stability, neck collar for physical activities due to little muscle in the neck so it flops around easily and wears a safety helmet when walking unaided as she falls easily and hits the floor with the head first. She also wears AFO leg braces as her knees and ankles are weak and collapse easily and they provide Carmela with some stability to walk.

Having to deal with everything she still finds the determination to carry out sports even if she has to do it differently. She is now aware she has to keep active to help keep her mobile for longer as her condition progresses and there are days she gets frustrated because she can't do what her friends can. But because she loves everything active she doesn't mind what she uses as long as she is having the best time. Carmela requires specialist equipment for her to carry out some of these activities and they can cost into the thousands!

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