Carmela is a very happy, bright and funny young woman with a zest for life but she struggles with daily obstacles. She has L-CMD, a progressive muscle wasting condition. Carmela and her family have raised an extraordinary £400,000 to support research into LMNA muscular dystrophy.
Cure4Carmela
My name is Carmela, some call me Mella, Car or Caramel! I am 12 years old and a regular visitor to hospitals. I have a progressive muscle wasting condition called LMNA Congenital Muscular Dystrophy. This wastes away my muscles for movement and breathing muscles over time, with a high risk of a cardiac arrest. I now have an inserted defibrillator because I was just a few heart beats away from a cardiac arrest whilst sleeping, so this gadget keeps me alive.
Unfortunately for me, my rare mutation of this condition has progressed into 3 more health conditions, meaning I have to fight even harder through the tough stuff. I now have Insulin resistance diabetes, so daily I have to take lots of medication. Lipodystrophy which causes my body the inability of storing unwanted fats and sugars we eat that isn’t burnt off, to store around my organs and in my blood. This means I am at high risk of organ failure. Due to Lipodystrophy, I do currently have Liver disease and very high fat in my blood, so I am on a very strict diet to try and bring the levels down. I have to exercise as much as possible to break down the stored fats but unfortunately, due to having Muscular Dystrophy and limited energy and muscle strength, this makes it very difficult.
I try to stay motivated by helping others in similar situations. I share positive thoughts, exercises and activities online and fundraise to help others have hope. To date, I have helped Muscular Dystrophy UK raise over £400,000 and am a Young Ambassador for the charity. I was also honoured to be awarded the youngest ever MBE in 2025 for my fundraising efforts.
I fundraise for Muscular Dystrophy UK because I want to raise money to help find a cure or treatment to change people’s lives living with a condition like mine. But I also want to inspire other children with a disability. Like the modelling I do. I’d love to become an advocate for disability clothing and show people to follow their dreams, whatever they may be.
Net proceeds from fundraising will be split 80 to Muscular Dystrophy UK’s research into LMNA congenital muscular dystrophy and 20% to help support Carmela with future welfare needs.