Carmela’s Fight to Stay Mobile
Carmela has a rare progressive muscle wasting disease, shortening her life to around 16 or less. Carmela is a fighter and is determined to stay mobile and enjoy her short life – but it costs!
Carmela is a very happy, bright and funny little 5 year old girl from Wiltshire with a zest for life but she struggles with daily obstacles.
Carmela’s condition is called LMNA Congenital Muscular Dystrophy which is a very rare type of progressive muscle wasting disease with only around 50 known cases in the UK. It weakens every muscle in the body including the heart and lungs. Consequently, children with the condition can be lost suddenly due to heart related problems or are fortunate to make it to 16 years.
We are needing help for Just4Children to fund ongoing specialised equipment and physical therapy as she grows and, as the disease progresses.
Carmela currently has no regular physio due to lack of government resources! So, we are having to make sure we do daily regular stretching and mobility exercises but not being paediatrically trained we worry we are doing more harm than good. Therefore, we would like to pay for private physio.
Carmela requires regular therapy to help keep her muscles relaxed, joints loosened to reduce joint contractures and spine deformities that come with this progressive disease but to help keep her mobile for as long as possible.
In addition, we want to create an accessible garden all year round for her wheelchair and days when she has energy to walk about, which involves the garden being levelled out and astro turfed.
Carmela’s condition also requires regular hydrotherapy which helps relieve muscle and joint pain which is a daily thing for her, so we would like to get a hot tub and shelter so she doesn’t have to travel so far for her therapy.
Carmela has weak neck muscles causing her to have a floppy head so she wears a safety helmet as her head hits the floor like a brick when she falls and a neck brace most of the time to support her head but, to help reduce kyphosis in the cervical area as she grows. Carmela also wears a lycra suit under her clothes to support her spine as she grows and for more stability to walk.
Carmela uses a power wheelchair for long walks and a walker to get about.
Carmela needs your support!