Father’s Day: CMD Dads in Their Own Words

In the same spirit as our Mother’s Day blog post, we didn’t want to leave out our incredible CMD dads. This year, we invited a small group of CMD dads to reflect on their journeys—how fatherhood has shaped them, what they’ve learned from their children, and the everyday moments that anchor their strength. Their voices offer humor, honesty, and a powerful reminder that the heart of caregiving isn't about gender—it's about love, resilience, and showing up when it matters most.

Meet Our CMD Dads

Bill, New York, USA Other CMD Dad

Bill is dad to Nova, whose fierce independence and joy ground him during uncertain times. He’s learned to never underestimate people—especially children—and finds connection through small daily rituals like tucking her in each night. Bill encourages other dads to take the journey one day at a time and appreciate the now.

Wayne, California, USA Collagen Vi Dad

Through his son Alex, Wayne has learned to view life differently—with patience, grace, and humor. He stays grounded by observing how Alex navigates the world. Wayne has also learned the importance of giving his child space when they need it. His advice to other dads: As difficult as it may be, stay present and engaged.

Bram, Holland, NL LAMA2 Dad

The unbreakable spirit and positive outlook of Bram's daughter inspires him every day. He and his parenting partner support each other through constant communication. He’s found strength in connecting with other rare disease dads, and believes in the importance of finding your joy while caregiving will go a long way.

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What’s one thing you’ve learned about yourself since becoming a dad to a child living with CMD?

“I have learned to never underestimate people. I am continuously amazed at my daughter's resilience and independence. I've learned to step back and let her try things that I would have stepped in and helped my other kids with.”

— Bill, New York

“I've learned to view life through Alex's eyes. I'm reminded of when he first took swimming lessons. During a lap, he appeared to be struggling and I grew upset because nobody was helping him. However, at the end of the lap, all I could see was a huge smile across his face. Alex never viewed himself as having a disability. It was me who was viewing him that way.”

— Wayne, California

What’s something about your CMD child that inspires you daily?

“Her spirit to never give up and always looking for solutions to participate. She never complains and she is always happy.”

— Bram, Holland

What helps you stay grounded when facing uncertainty about your child’s future?

“Her strength, joy, and fierce independence. It's hard for me to see her struggle, but she's just living her best life, even through the pain. She just brings joy to everything she touches and is going to be fine.”

— Bill, New York

“What keeps me grounded is simply observing Alex from afar. He has been living on his own in the residential hall at college for the past two years and he has shown me how independent and capable he truly is.”

— Wayne, California

How do you and your parenting partner (if applicable) support one another through the emotional and logistical challenges of raising a child with CMD?

“We talk a lot about it [our emotions, the care planning, and everything in between. Communication is key].”

— Bram, Holland

How do you stay connected to your child in ways that are unique to your relationship?

“Nova likes to go places. I like to take her to new places and experiences as much as possible.”

— Bill, New York

“I've learned to connect less often [as part of respecting his independence]. He grows irritated whenever I try to connect. In other words, he's like any other kid...”

— Wayne, California

If you have a role in advocating for your child’s care, education, or inclusion, what’s one thing you’ve learned in that process?

“That only with patience and a lot of perseverance can you change things. But that it is indeed possible to make a difference for your own child or other children with CMD”

— Bram, Holland

What’s something your child has taught you about how to approach life?

“Live now, enjoy what you have. Experience everything and laugh often [with your family and your child living with CMD].”

— Bill, New York

“Alex has taught me to readily accept what you are dealt with in life. I have never once heard Alex complain or get upset about his condition. In fact, he often shuns any form of preferential treatment and prefers to deal with any challenges on his own.”

– Wayne, California

What’s something you wish people understood better about being a dad to a child living with CMD?

"The impact on daily life. [constant balancing act of caregiving, scheduling, and advocating that many don't see. From navigating appointments and equipment needs to adjusting routines around fatigue and accessibility, it’s a quiet, ongoing labor of love that touches nearly every aspect of daily living. On top of all that—making space to just be a loving parent.]"

— Bram, Holland

If you could offer one piece of advice to another dad just beginning this journey, what would it be?

At first, I was overwhelmed by the medical unknowns. It was all I could think of. The diagnosis overwhelmed her as a person. But, as time went on she completely outshines her MD. It's funny, she has 4 able older brothers and everyone has their own issues. Most days she isn't the one who I worry about the most.

— Bill, New York

"Although extremely difficult, as best as possible, allow your child to learn, experience, and fail on their own. They are far more resilient than you can imagine. As parents, accept that there are no right answers when it comes to treating your child. Parents, doctors, and researchers are all learning in real-time."

— Wayne, California

What does self-care look like for you—realistically—and when do you find time for yourself?

"Sleep well, run a lot and party once in a while with friends. [to recharge and stay grounded]"

— Bram, Holland

What’s a tradition or routine—big or small—that you’ve created with your CMD child together?

"Every night I carry her to bed, and tuck her in with all her stuffed animals and blankie, even though she doesn't need me to carry her. I get her a water, read her a book, and tell her I love, love, love, love you."

— Bill, New York

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This Father’s Day, Cure CMD is filled with gratitude for the incredible dads in our community—those who show up with quiet strength, hard-earned wisdom, and unwavering love. Whether you're juggling care routines, advocating behind the scenes, or simply making space to listen and connect, your presence matters deeply. Thank you to the fathers who shared their stories with us, and to all the CMD dads out there—your resilience and heart inspire us every day.

Looking to honor ou CMD dads? Here’s how…  Donate to Support CMD Families  Host a Family Fundraiser Share CMD Caregiver Resources