Carmela’s story

"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’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."