This Duchenne Muscular Dystrophy Family Lives Life to Its Fullest
A hostess I am not! Planning a child’s birthday party or hosting a team meal is the extent of my party planning skills. I am usually introverted and quiet, and only a few people will hear me talk much. Writing is my favorite way of communicating, and it has led me here to you.
It’s OK, though, because I typically don’t need to send out any invitations to feel like I’m at a party. My husband and I made our own party. We are about to have seven children — four boys and soon to be three girls, with ages ranging from almost born to 20 years old. So, there you have the title of this column, “Party of 9!”
While I describe myself as a quiet introvert, imagine the opposite and you have my husband and all but one of our kids. We are a big, loud family. If you think we are big, wait until you see the size of our van. We stand out.
We stand out while walking down the street or at a busy store. Three of our sons live with Duchenne muscular dystrophy and use a mobility device or wheelchair. I know that the number of wheels we travel with is part of what makes us stand out.
My 12-year-old son fell and broke his leg about 15 months ago and hasn’t walked independently since. He uses a Permobil powerchair most of the time. My 15-year-old, who will be a sophomore in high school this year, uses the same type of chair for school and work but walks independently at home and within the confines of a classroom, a bathroom, or at a restaurant. My 10-year-old uses a mobility scooter for long walks.
I know we stand out because of all of the wheels, I get it. But I also hope we stand out because we are always laughing — we are a party on wheels. I hope we stand out because our guys in their chairs are full of life. I hope it’s because our youngest daughter hitches a ride on the back of a chair like she’s a princess traveling in a royal carriage.
A couple of years ago, I met a mom whose son was recently diagnosed, at a small conference held by Parent Project Muscular Dystrophy, an advocacy group working to end Duchenne. She told me how much it meant to her to see our family happy, laughing, and smiling. I hope that other people also see our happiness before anything else.
I will never say Duchenne is easy. It is hard. It scares me all the time. I’m scared that at any moment, my children’s health could take a turn for the worse and we will lose them. Or that they will fall and injure themselves beyond repair. But the Duchenne community is doing things for our boys that have never been done before. Collectively, we could be changing the outcome.
Among the groundbreaking things happening are clinical trials, new therapies, and the work of world-renowned specialists who have dedicated their lives to changing how Duchenne progresses and ends. My boys have participated in a Translarna (ataluren) trial for years. We know what we are up against. Yet we plan to make the best of this life and our days together, and we share immense joy and love.
I think the best way to describe Duchenne is that it’s like the person you don’t want to invite to a party. However, if Duchenne didn’t come, neither would the people you invited. In my case, my sons Max, Rowen, and Charlie are some of my favorite people. If the only way for them to come to the party is with Duchenne, then Duchenne comes, too. I don’t want to miss out on a single minute with my boys.
Unfortunately, that means that Duchenne sometimes crashes the party. We have bad days, weeks, and sometimes months just like anyone else — probably more so — but we try not to let it keep us down. I hope to use this column to share the good and the bad, the joys and the sorrows, the triumphs and the failures, and the lessons and the love we experience every day.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.