Carmela’s story

A unique story of an extraordinary adventurer. Read about Carmela and her Calvert Exmoor Experience...

Carmela has a rare muscle wasting disease called LMNA Congenital Muscular Dystrophy which progressively weakens every skeletal muscle and the heart and lungs over time, shortening her life to late teens, if not before due to the heart and lung issues. 
Along with her mum Lucy, Carmela visited Calvert Trust Exmoor in 2019. Lucy very kindly took the time to tell their story…



Why Calvert Exmoor?

“Well what can we say but ‘fantastic’.

We had a great experience at the Calvert in Cumbria but we wanted to visit the other site closer to home in Exmoor as we heard it was bigger and better – and so it was."

About Carmela

"LMNA Congenital Muscular Dystrophy progressively weakens every muscle including the heart and lungs. It can be very difficult for Carmela to be active like her school friends because she needs specialist equipment to do most fun things we take for granted.

Because her disease just affects her physically, mentally she is bright as button which probably makes things more difficult for her on an emotional level because she thinks she can do every thing like her friends can, which she can, but with the help of someone or assisted equipment, and this isn’t just available at the drop of a hat.

Carmela also requires a carer or an adult under her care to assist her physical needs, transferring her, personal hygiene, getting dressed and even cutting up food because the muscle strength in her arms, hands and legs are getting weaker."

Carmela at Calvert…

"So when Carmela’s local hospice offered her the chance of attending Calvert Exmoor through a ‘Life Chances Grant’ to help her build self confidence and self esteem, we both jumped at the chance.

Carmela is a natural adrenaline junky and loves taking risks and doesn’t seem to be phased by heights, speed etc. She also loves to take the lead which I’m sure our Calvert Exmoor instructor Tyler will agree. We knew Carmela’s condition would be catered for and so we didn’t have any reservations about taking part in every activity.

Carmela took part in abseiling, in which she was strapped to a wheelchair and couldn’t stop laughing at me screaming with fear, she thought it was highly hilarious that I was scared and she wasn’t."

What were some highlights?

"Carmela’s favorite activity is always the zipwire because it goes fast. She was strapped in a seated sling with head support for her floppy body so she was able to see all the views whizzing at speed. Canoeing was accessible too because it had a mobile hoist and a choice of a supportive seat or lying down in a cosy bean bag in the canoe. Carmela especially loved the endless hot chocolate provided whilst canoeing.

Cycling was great fun and Carmela loved the lead role Tyler had given her, especially telling us to pedal faster so she could go wheeeeeeeee.

Our Instructor Tyler was incredible. He gave Carmela the confidence to do every single activity and made her feel safe, especially when her body is too weak to do all these activities unaided."

Highlights continued…

"The food was great with lots of variety, despite our restricted diet which was catered for with prior notice. Our accommodation was what we expected and met our specific needs, including a profile bed, mobile hoist, fridge and walk in shower. The view across the lake from the club balcony is just breathtaking, especially on a dry sunny day enjoying a drink and soaking up the view.

It was a brilliant weekend, all staff were fantastic and Carmela enjoyed every moment. She already wants to come back but with daddy next time too.

It really is a place which caters for ALL disabilities, young and old, mobile or immobile. A place for all the family to participate without leaving someone out.”

Carmela has her own fundraising campaign to raise vital funds for therapy and specialist equipment – you can donate to her cause online.

Discover more about Carmela and her triumphs and experiences with Muscular Dystrophy through Facebook or Instagram.

Carmela's Calvert Exmoor Experience

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