10K Run For LMNA Congenital Muscular Dystrophy

On 19th May 2019 I will be doing a 10K run for Carmela’s stand up to Muscular Dystrophy to help raise money for vital equipment and support she needs. A small donation can go a far way to helping improve Carmela’s life, so please share her story. Meet my 5 years old cousin, Carmela. She has a rare form of Muscular Dystrophy called LMNA Congenital Muscular Dystrophy. It means her skeletal, heart and lungs weaken as she grows, shortening her life. With her type of MD, her heart is at risk of a sudden heart attack. Carmela has weak neck muscles causing her to have a floppy head so she wears a helmet. She also wears a lycra suit under her daily clothes to help give her stability and reduce deformities in her spine as she grows. On top of these she wears knee straps as her knees are bendy and weak and can give way easily. Despite all of this you can always guarantee that Carmela will put a smile on everyone’s face. She has raised money for her children's hospice as a way to say thank you for her carers who look after her. She also continues to raise money for MDUK to help find a cure for her deadly disease. Most days Carmela can get exhausted causing her to go very pale and blue lipped. Despite not being able to run, jump, hop, climb and do general everyday tasks she still finds the motivation to raise money for charity whilst putting her little body through it. She never complains about her daily pain and limitations, she finds a solution. Carmela has inspired so many people she has met to never give up. She is truly an inspiration to both young and old!