Thirty-eight-year-old Ed Dawson, from Swindon, Wiltshire, has Becker muscular dystrophy. Michelle talks about how Ed’s condition has affected the family, and setting up a Muscular Dystrophy UK Family Fund, Fast Eddie’s Fund, to raise awareness and vital funds for the charity.
I met Ed 16 years ago, in 1999, and we quickly became inseparable! We got married in 2003, and had our first daughter, Aaliyah, in 2006. Five years later, we had our second daughter, Aimee.
When I first found out Ed had Becker muscular dystrophy, I had no clue what it was. After doing some research, I went to an information day with Ed and his brother, who has the same condition. We all learnt more about Becker muscular dystrophy, and how to manage the condition as it progresses.
It was around the time of the birth of our second daughter, Aimee, when Ed’s condition started affecting him more. He fell easily, and wouldn’t hold the baby unless he was sitting down, fearing he might suddenly fall over. Pushing the children’s buggies around also became increasingly difficult for him.
Life can be challenging, but I have learned how to ‘fight’ for my family. The girls understand that their daddy has special legs – they know he uses his wheelchair because his legs are wobbly. Our eldest daughter understands a bit more about his condition.
Ed’s condition isn’t going to go away, and he will be a full-time wheelchair user when he is in his 40s. My girls are carriers of the faulty gene. I love my family unconditionally and wouldn’t change anything.
Setting up a Family Fund like Fast Eddie’s Fund is a great way to fundraise for Muscular Dystrophy UK. It was really easy to set up; we worked closely with the charity, who did most of the work! Setting up a Family Fund means you get a say in where your fundraising money goes, and the research it will fund.
We’ve taken on a number of challenges with family and friends, including climbing Mount Snowdon and organising numerous bake sales!
We’ve got lots of ideas to keep our fundraising going – more bake sales, a skydive and Europe’s longest zip wire – to name just a few!“
Are you interested in setting up a Family Fund to raise funds and at the same time raise awareness of Becker muscular dystrophy? Find out more.