An Open Letter to Duchenne Parents

An Open Letter to Duchenne Parents

Whether your child has been living with Duchenne muscular dystrophy for years or was just diagnosed, I’m here to remind you that it isn’t the end of the world. It’s just the beginning, and there’s more hope than ever. 

You have one of the hardest jobs. No parent should have to balance a child’s desire to get up and play with the need to sustain muscles. You help with the physical tasks. I wish I could have taken care of myself without relying on my parents. I wish their biggest concern had been normal teenage drama. 

When your child gets old enough, there will be tough conversations. “You’re not going to be like everyone else.” They’ll start to notice that they look different. The time will come when a wheelchair is needed.

Parents, please have conversations about sexual health, too. We aren’t immune from the same desires as others, and it’s important to address the topic within the context of your own beliefs.

Sticking with your child through it all is the most important thing you can do. You are brave beyond measure and continually make the world a beautiful place. I’m amazed when I see parents do everything in their power to normalize their child’s life. It’s not easy — you’ll lose blood, sweat, and tears — but you show up every day. If not you, then who?

Join our MD forums: an online community especially for patients with Muscular Atrophy.

Your child will need you to help bathe, eat, move in bed, transfer, and more. I don’t know when I’ll lose my current abilities, but I have faith my parents will be there to help.

The small moments are huge. We draw our strength from the way you fight for us — and keep your composure despite it all. 

Even though your days are often dictated by doctors’ appointments, meltdowns, physical inabilities, transportation conundrums, and school logistics, there’s more to life. Expose your child to good friends and, when the time comes, girlfriends. Make time to travel and let him experience God’s beautiful creation. Share stories of your own life and teach life lessons, even if you don’t understand the point. 

Whether he admits it or not, your son loves you. He looks up to you. Your actions make a bigger impact than you think.

Smile more than you frown. You can cry, but the moment you blame yourself and those around you, you’ve let Duchenne win. Don’t shield your child from the truth. Dwell on the positive experiences — laughter, walking through the park, watching TV, playing video games, stretching, hanging out with friends — so we aren’t burdened by negativity in our shortened lives. 

Operate out of hope that a cure will be found. It’s not a misplaced hope. Look how far we’ve come. There are clinical trials available, and Crispr halted the progression of a canine version of the disease.  

But don’t place all your hope in one basket or you will be disappointed. You can hope that your son’s life will improve with modern technology, be enriched by friendships, and feel complete with a purpose. We all have God-given gifts, and we are here for a reason. Don’t ever let yourself think otherwise. 

Parents, keep up the long, hard fight. Thank you for making daily sacrifices to improve our lives. We love you more than you know.

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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 Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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8 comments

  1. Raymond Huml says:

    Great reminders for us all, Hawken. Keep up your writing. You have a true gift for writing – and encouragement.

  2. Joyce Carpenter says:

    Thank you, Hawken. You are very encouraging; it is a journey of love we are all on and it does affect everyone in the family.
    Ben Carpenter’s family in Kalamazoo, MI

  3. Ashley Ward - mom of Jackson says:

    I love your articles and I am inspired by the info you deliver! Thanks for reminding us parents about the affect our reactions and care imprint on our boys lives!!

  4. Vivek says:

    Thank you Hawken for making me realise the great opportunity of sharing a solid bond of love with my son.. of an opportunity to have my life filled with love for my son

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