Carmela enjoys the fast lane in life.
She loves speeding down the hills on the back of mummy’s bike and gets a good buzz out of fast funfair rides.
She is very sociable and is always smiling – pretty much anything excites her! Having said that, there are days she can get upset because she can’t keep up with her friends, or she is fed up of falling over.
Carmela walking in a previous Bristol Fashion Show
Carmela is a happy, bright and very funny girl, but she has a very rare form of muscular dystrophy called LMNA Congenital Muscular Dystrophy affecting only 1 in every million babies. It is a cruel muscle-wasting condition for which (at present) there is no cure or treatment. She struggles with daily tasks, and her condition also affects her heart and lungs, and means she is likely not to make adult life.
This condition weakens skeletal muscles and children ultimately lose the ability to sit, stand and walk unassisted. The heart is affected with a risk of sudden death due to the conduction defects associated with this condition.
Mutations on the LMNA gene can present as one of four types of LMNA related disorders:
- LMNA Congenital Muscular Dystrophy #LCMD LMNA-CMD
- Emery-Dreifuss Muscular Dystrophy Type 2 #EDMD2 Emery Dreifuss Muscular Dystrophy
- Emery-Dreifuss Muscular Dystrophy Type 3 #EDMD3
- Limb Girdle Muscular Dystrophy Type 1b #LGMD1B Limb Girdle Muscular Dystrophy (Beyond Labels & Limitations, Inc.
Over time, muscle weakness causes most infants and children with L-CMD to have trouble eating and breathing. The breathing problems result from restrictive respiratory insufficiency, which occurs when muscles in the chest are weakened and the ribcage becomes increasingly rigid.
However, Carmela has managed to keep bright and incredibly busy.
She even took on a high profile 2000km walk challenge over 30 days duiring the Pandemic, with her mummy and friends supporting her. Carmela’s favourite superhero is Wonder Woman, who inspires Carmela to keep fighting daily and to stay strong, and so she decided to walk/wheel the distance from her home to Wonder Woman’s home in Italy in the new film ‘Wonder Woman 1984’. The campaign was such a success it even attracted a donation and messages from the film’s star Gal Gadot.
Carmela has ambitions and dreams and one of those dreams is to be a model who can be seen on a high street shop poster to help spread #inclusivefashion to help inspire young children like her.
After nearly 4 years of no jobs through 2 model agencies, Bristol Fashion Show said we would love to have Carmela model at their fashion show. Carmela first appeared at the show just age 5 then last year age 8yrs. Carmela absolutely soaks up the attention and atmosphere and will be appearing at the Bristol Fashion show for a 3rd year to help raise money for children like her living with a progressive muscle wasting condition.
Donate to Carmela
We are so pleased to have Carmela join us again this year, and are incredibly proud to be be able to support her and other children as they stay strong. If you would like to donate to help with vital research and funding for those living with L-CMD, please click here. Every donation is gratefully received, and every single of of you help!
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