CMD Moms Share Their Journeys This Mother’s Day
- James Immekus
- May 1
- 7 min read
Updated: May 7
A Different Kind of Strength
Mother’s Day is more than a celebration—it’s a tribute to resilience. For mothers raising children with congenital muscular dystrophy (CMD), this day holds deeper meaning. Not only are they faced with the challenges of just being a mom, CMD parenting requires them to go that extra mile for their child (add several more miles after that). They have to become their child’s medical expert, physical therapist, nutritionist, equipment technician, advocate, and relentless time manager – all before lunch. Their unwavering dedication inspires our community, even if it's not always visible to those beyond it. This Mother’s Day, we're putting our CMD moms first.
Meet Our CMD Moms
Amy, Tennessee, USA
Col6 Mom
A runner and optimist, Amy finds relief and renewal in movement and in moments shared with her husband. She speaks openly about the unexpected inner strength she discovered in the face of great challenges as a CMD mom.
Caitlin, North Carolina, USA LAMA2 Mom
Caitlin, a mother of three, sees the richness in her family’s journey. Her children have grown up side by side—building compassion and perspective from a very early age.
Britney, Florida, USA Dystroglycanopathy Mom
A devoted mother of two, Britney brings strength, perspective, and grace to her role as a CMD parent. With the unwavering support of her husband, Britney balances caregiving with intention—making space for self-care, community, and moments of joy.
Hanti, Mauritius, AF
LMNA Mom
Hanti has found deep meaning in connection—with her family, fellow CMD parents, and a global CMD community that understands her journey. She’s discovered strength in solidarity and emphasizes the power of reaching out. Her story is a reminder that, even across oceans, CMD families are never alone.
Taylor, DC, USA
Selenon Mom
Taylor finds deep joy in witnessing her son’s spirit and resilience as he meets every challenge with determination. Building community with other SELENON families has brought her family connection, understanding, and lifelong friendships.
What's the most important thing you've learned about yourself since becoming a CMD mom?
“I was able to function through the hardest time in my life quite effectively. It was not easy or fun but I learned I really can do very hard things without losing myself completely.” — Amy, Tennessee
“I've learned I am stronger than I ever thought possible. That I can experience so much joy and so much grief at one time and still keep going. That there's a fire in me, a fight I didn't know was there, all because my daughter needs me, and I will never back down.” — Britney, Florida
What's an unexpected joy or surprise you've experienced as a result of having a child with CMD?
“Elliot is my first born. She made me a mom. I am a better person for having her in my life. I am blown away at what a smart and kind person she is growing up to be. She absorbs so much of what we teach her and it is incredible to see her put that into practice. Elliot will tell you "We are responsible for our community, and our community is responsible for us. At a young age, she understands so much about how we each rely on one another and that continuing to show up for each other is the best choice we can make daily.” — Caitlin, North Carolina
“One unexpected joy has been discovering how much happiness is in the small, everyday moments. No matter how challenging this journey can be, I wouldn’t change a thing—our son has given us experiences beyond anything we imagined. He fills our home with more laughter than we ever thought possible, and his humour brightens every day.” – Hanti, Mauritius
“Being a parent to a child with a disability means experiencing the deepest joy in the milestones that other parents might take for granted. There’s nothing like seeing the pride and pure happiness on your child’s face when they finally do something you once wondered if they’d ever be able to do. Our son, for example, can’t jump in the traditional sense—but he’s found his own way. When he is excited, he jumps with his whole spirit, and it’s pure magic to watch him light up. Witnessing how fiercely he meets every challenge is one of the greatest privileges of my life. He is more determined and resilient than anyone I’ve ever known.” – Taylor, D.C
What's one self-care activity you rely on to help sustain you as an effective caregiver?
“Running is my go-to stress reliever. Dates with my husband and social time with friends are a close second.” — Amy, Tennessee
“Prioritizing my mental health has been a game changer. That allows me to stay grounded and present so I can be the best mom and wife possible. Sometimes that means taking a walk, reading a book, or shutting off social media when I need a break from the world.” — Britney, Florida
When caregiving gets stressful or tiring, what's something you do to get through it?
“Another incredible mom in this very community says it perfectly and it is the very mantra I use when I am overwhelmed: when the world makes us weary and we start to lose our strength, lean into your child. Spend time as a family and re-energize together.” — Caitlin, North Carolina
“Although I know how important breaks are, I’m notoriously bad at taking them. When caregiving starts to wear me down, I rely on simple things that uplift me. For example, I’ve found that playing worship music is a great stress reliever for me — it reminds me of God’s presence and gives me the strength to carry on, even when I’m tired. And to ensure I recharge more fully, my husband and I carve out at least one short getaway each year—a proper pause to rest, reconnect, and return feeling renewed.” – Hanti, Mauritius
Who or what has been your greatest source of support and encouragement as a CMD mom?
“My husband is always there for me but I have found so much support and comfort and knowledge from the CureCMD community on Facebook! They have taught me so much throughout this whole process as we enter new seasons and new problems, I know I am not alone even with this rare condition.” — Amy, Tennessee
“Undoubtedly, my husband. He's been there through it all- the ultrasounds, the hospitals, the endless doctor visits, and all the heavy conversations in between. I wouldn't be the mom I am without him by my side.” — Britney, Florida
Can you share a positive lesson your other kids have learned from having a sibling with CMD?
“Our sweet babies, Shepherd and Lenoir, were born last September and are wonderful additions to the family. Elliot has always wanted siblings and I cannot wait to see what memories they make together. Elliot is putting into practice skills she has not used before now that she is a big sister. Her patience and understanding with her little brother and little sister is incredible!” — Caitlin, North Carolina
“Having a sibling with CMD has profoundly shaped our other children. It opened their eyes to the daily challenges people face and taught them deep, instinctive empathy. They don’t wait to be asked — they’re always the first to offer a hand when someone is struggling and happily pitch in wherever they’re needed. Watching their brother navigate life has inspired them to act with kindness, look out for others, and never shy away from lending support.”
– Hanti, Mauritius.
How has connecting with other CMD families positively impacted you and your family?
“We were able to go to the [SciFam] conference in Chicago a few years back and a beach trip this past year for surfing! Being in the CMD community is a form of coming home for us. There is an unspoken understanding that is so comforting. It is a wonderful space to feel a sense of belonging and for our kids to find common interests amongst their peers.” — Caitlin, North Carolina
“There’s nothing quite like meeting other families to whom you don’t have to explain every detail of your life because they just get it! I’ll never forget our first [SciFam] conference: we planned to meet up with another family. Both families arrived late, but not a single apology was needed—because they understood exactly what comes with managing CMD. There’s an incredible comfort in journeying alongside families who understand and support each other practically and emotionally. What’s even better is when our children living with CMD get to meet one another and form their own friendship bonds.” – Hanti, Mauritius
“When our son was first diagnosed, we felt overwhelmed and isolated. But finding community with other SELENON families has been an incredible gift. We've learned so much—about therapies, equipment, and navigating the system—but we've also connected with people who truly understand what we're going through. There’s comfort in knowing we’re not alone and most importantly, it gives our son the chance to build lifelong friendships with other kids who understand his experience.” – Taylor, D.C
What encouraging message would you give to a new CMD mom just starting out?
“Be kind to yourself. Extend yourself more grace than you think you deserve because no one has all the answers and this is not something you will “fix”. Your job is Mom. Love your baby even if you can’t fully understand it all right away. I promise you, your child will amaze you.”
— Amy, Tennessee
“Take it one day at a time, and always trust your gut and your intuition. You don't have to have it all figured out, and you are absolutely not alone in this.”
— Britney, Florida
This Mother’s Day, Cure CMD is thankful for all of our CMD moms and their fierce love and tireless advocacy. They carry hope when it’s heavy, celebrate every small milestone, and never stop fighting for their children. A special thanks to our moms who shared a bit of their perspective. We hope all of you are as inspired as we are.
Looking to make a difference? Here’s how… Donate to Support CMD Families Host a Family Fundraiser Explore CMD Caregiver Resources
