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Our Favourite Way to Raise Awareness of Duchenne Muscular Dystrophy

We're proud to be supporting the Muscular Dystrophy Campaign this year! We'd love your child's school to get involved in the Bake a Difference Cake Sale to raise money for this worthy cause

 

We've teamed up with a family and a charity to help raise awareness of this devastating muscle-wasting condition. We were touched by the story of Sammy, a little boy who has the condition and who has touched our hearts.

Bake a Difference Cake Sale

Before we tell you about Sammy and his condition, we'd like to invite you and your child's school to get involved in the Bake a Difference Cake Sale on 5th December 2014.

Visit the Muscular Dystrophy Campaign website and download your information pack to get started - join with 5,000 schools across the country who are baking to make a difference!

Sammy's story

Meet SammyOn the surface, Sammy looks like any other six-year-old, happily playing with his favourite cars or trying to chase his older brother in the park.

However, hiding underneath his cheeky smile lies a severe muscle-wasting condition. Sammy's father, Oliver, remembers the day he was diagnosed:

"It was Easter 2012 and while other families were hunting for eggs, we were at Chelsea and Westminster Hospital getting the results from some tests. I remember thinking everything would be fine - I couldn't have been more wrong. Not only did we get our test results, but within 20 minutes of leaving the Hospital we also had a call from Great Ormond Street Hospital and an appointment two days later to discuss Sammy's treatment plan.

Since then we've been on what can only be described as a rollercoaster ride of emotions. Thankfully we've been blessed with a fantastic army of physios, clinicians, one-to-one support in school, and Speech and Language Therapists. As a parent, you want the best for your child, and we've seen him improve immensely since his diagnosis. Sammy has learned to cope with all his appointments, and he sees the benefits.

Things like climbing on a climbing frame in a playground are often taken for granted; however, Sammy was not able to do this until a year ago. While there is no cure, the use of steroids are prolonging his mobility, and allowing him a chance to experience these everyday activities.

"While he is improving, his mother and I are faced with a daily realisation that his condition may get worse. He may end up in a wheelchair and may not live to see his 30th birthday, but Sammy is a fighter, and he lives life to the fullest every day."

What is Duchenne muscular dystrophy?

Duchenne muscular dystrophy is a life-shortening muscle-wasting condition, caused by the lack of a vital muscle protein called dystrophin. The condition causes muscles to weaken and waste over time, leading to increasingly severe disability.

The condition affects not only the muscles in the limbs, but also those of the heart and lungs, leading to life-threatening complications.

Facts about Duchenne muscular dystrophy

  • Numbers: Duchenne muscular dystrophy currently affects around 2,500 people in the UK and around 100 babies are born with the condition each year.
  • Causes: The condition is caused by genetic mutations on the 'X' chromosome, meaning almost all of those affected are male. These mutations prevent the body from producing the vital protein, dystrophin, which is needed to build and repair muscle.
  • Diagnosis: Most children with Duchenne muscular dystrophy are diagnosed by the age of five. Most will use a wheelchair by the age of 12 and will face life-threatening health problems by their late teens as the muscles of the heart and lungs weaken. Few of those born with the condition currently live to see their 30th birthday, although with medical advances, life-expectancy is improving.
  • Treatment: The right specialist healthcare and equipment - including access to heart and respiratory experts and regular physiotherapy - can make a significant difference to both the quality and length of life for people with Duchenne muscular dystrophy.
  • Lifestyle: While it is severely disabling, many of those living with the condition lead full and active lives. There are authors, designers, campaigners and Paralympians with Duchenne muscular dystrophy.
  • Cure: The first drug treatment addressing the cause of Duchenne muscular dystrophy is set to become available next year. Translarna focuses on a specific type of genetic mutation and is relevant for 10-15% of people affected. Further promising potential treatments are in clinical trials; some of them at an advanced stage.

More information

Sammy and family receive a lot of support

For more information about the condition, please visit the Muscular Dystrophy Campaign's website or call their information service on 0800 652 6352 (freephone).

 
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