Stoke Gifford resident Mitch Coles has been living with Duchenne muscular dystrophy (DMD) since he was two years old. At the age of 18, he was told that he would not live past the age of 21. Now 26, Mitch has a partner and two children and is living his life to the fullest. He wants to show others that it is possible to parent with a disability and he provides support to those doing this through his blog ‘Two Doughnuts’.
DMD is a genetic disorder characterised by progressive muscle degeneration and weakness. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Muscle weakness can begin at an early age, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk. By the early teens, the heart and respiratory muscles also are affected.
Mitch now uses a wheelchair to get around and is looked after daily by a carer as he is unable to move any of his limbs.
Even with these difficulties, Mitch is still able to parent his two children, Aubrey and Ethan. He said:
“I have always wanted to have children. I knew it would be difficult and before we started our family I was worried about what I wouldn’t be able to do. Some people told us that it wasn’t a good idea, but that just made me more determined! A lot does come down to my partner, Alice, but she still gets some time to herself while I look after the kids with the help of my carer.”
“The hardest thing about parenting with DMD is not being able to do some things, such as picking my children up, taking them swimming or for bike rides. However, I can’t imagine my life without them. I haven’t let my disability stop me from having a normal life and I certainly haven’t let what that doctor told me at 18 hold me back.”
Mitch started writing his blog about two-and-a-half years ago, not long after his daughter was born. He had previously written articles for charities and received positive feedback, so decided to reach out to others with stories of his DMD. At first, he didn’t know what to write about, so just started with whatever popped into his head, but he soon started to write about things that might help others or just make them feel better by putting a smile on their faces. He has written a range of posts, varying from travelling to other countries with a wheelchair to how to keep warm during the winter. Mitch says:
“I don’t really know what I wanted to achieve from my blog – from a purely selfish point of view, I really enjoy it; it is a way for me to air my frustrations! I want to raise awareness that there are different types of families and different dynamics. I hope other people enjoy reading it and if it helps just one person, then I’ll be happy.”
Mitch recently attended the Action Duchenne International Conference 2018 in Birmingham, where he was invited to speak about life as a disabled parent. His speech involved talking about his relationship with Alice and how they work together to parent their children. At the time, Mitch did not realise that the conference was being filmed but after receiving good feedback about his speech, he hopes that others will watch it and feel confident that they too can have a family of their own. If you would like to watch Mitch’s speech, you can do so on his Facebook page.
Having faced both the joys and difficulties of parenting with a disability, Mitch’s advice to anyone considering starting a family is:
“Be prepared and know what you’re letting yourself in for. Don’t listen to anyone who has nothing positive to say; just make the decision that is right for you and your family.”
If you would like to learn more about DMD, visit www.mda.org
Mitch’s blog visit may be found at twodoughnuts.wordpress.com
This article originally appeared in the January 2019 issue of the Stoke Gifford Journal news magazine (on page 8). The magazine is delivered FREE, EVERY MONTH, to over 5,000 homes in Stoke Gifford, Little Stoke and Harry Stoke. Phone 01454 300 400 to enquire about advertising or leaflet insertion.
