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Amelie’s Story

“ We had never heard of muscular dystrophy before Amelie’s diagnosis. At the time, our sporty and active three-year-old girl was walking in splints, but we just thought it would be a matter of having physio sessions to help strengthen her muscles. We had no idea that she would start using a power wheelchair just a few months later.

“Amelie’s diagnosis of Ullrich congenital muscular dystrophy (UCMD, a rare progressive muscle-wasting condition) was an absolute shock to the system. We immediately wanted to find out as much as possible, and one of the first leaflets we received from the hospital was from MDUK. Their information proved to be vital during the early stages of diagnosis and beyond, with their publications covering a range of areas from information about the condition, to housing adaptations, inclusive education guidelines and more.

“As well as this, we connected with a group of local families within the muscle-wasting community, and

we also attended a couple of MDUK’s National Conferences which we found very helpful as a source of information and a chance to speak to others living with muscle-wasting conditions.

“MDUK has also been there for Amelie by helping with a grant towards mobility equipment, and this money will enable us to purchase a stand-up wheelchair to give her greater independence.

“Amelie is a very sociable child and enjoys all kinds of activities, from sports to dance competitions to creative writing. She is incredibly determined and is always looking for her next challenge.

“I still have worries for Amelie, but the support from MDUK to help her live well today, as well as knowing they won’t stop looking for treatments for all the muscle-wasting conditions there are gives us hope.

“By playing in the Christmas Raffle, you’ll be helping MDUK provide groundbreaking research and life-changing support for families like ours. Thank you.”

Magda Davy, Amelie’s mum

It's easy to enter!

Simply click on the Play now button below. The closing date is 17 December and the draw will be held on 19 December 2023.

If you enter before 26th October you could be in with a chance to win one of 20 Teddy bear keyrings.