Making Our Way

Darrel Jr., who lives with Duchenne muscular dystrophy and was the recipient of a heart transplant.

Their story spans nearly three decades of parenting, caregiving, navigating challenges, celebrating milestones, and learning how to find joy in almost every situation.

With warmth, humor, and honesty, Darrel and Chaikia share what they've learned about partnership, resilience, faith, and raising a son who continues to inspire them every day.

From funny family stories to lessons learned along the way, this conversation is like sitting around the kitchen table with friends.

Whether you're a parent, caregiver, or simply someone who appreciates stories about love, family, and perseverance, you'll walk away from this episode encouraged.

We hope you enjoy this conversation with two genuine and joyful people.

In this vulnerable conversation, Mary shares what it truly costs to fight for a full life in a system that too often puts up barriers. She speaks candidly about the exhaustion of proving her son’s needs, the quiet ways lack of accessibility shrinks a child’s world, and the urgency she feels to create memories.

Most of all, she reminds us that her 14-year-old son Eddie is not his diagnosis of Duchenne muscular dystrophy — he’s a teenager and a human first.

This conversation is raw and deeply human.

In this heartfelt episode of Making Our Way, we sit down with Bill Barton — a father whose story takes us through the deep joy of fatherhood, the shock of an unexpected diagnosis, and the slow, transformative journey of learning what it truly means to be present.

Bill shares honestly about the helplessness that can come with watching the people you love carry pain you cannot fix. He reflects on the moment he realized that love isn’t always about solutions — sometimes it’s about showing up, staying steady, and choosing connection in the hardest moments.

Through it all, Bill reminds us that joy still finds its way in. In small moments. In laughter. In perspective. In family.

This is a conversation about presence, perspective, and the quiet strength of a father learning to walk alongside his child — not with all the answers, but with an open heart.

In this powerful episode, we explore the emotional and often unseen journey of a mother’s love. Sheryl Marazzo is a force of nature—fierce, steady, and filled with a bright hope. Living a life woven with heartbreak and tragedy, her resilience and sheer will drove her to find happiness and peace right alongside the unimaginable.

As a mom to three children—one living with a rare disease, one a rare disease carrier, and one battling addiction—she brings honesty, humor, and deep heart to a conversation about survival, sacrifice, and the unexpected ways we figure out how to keep going.

A long-time advocate and nonprofit founder, Sheryl’s story is framed by Duchenne muscular dystrophy, but beyond labels and medical conditions, hers is simply a story about being fully human.

In this powerful and deeply personal episode of Making Our Way, we sit down with Vivian, a single mother caring for her son who is living with Duchenne muscular dystrophy. She opens up about the emotional aspect of caregiving—the quiet moments of exhaustion, the light moments of joy, and how she digs deep to draw on strength—even when she doesn't have much left to give.

This conversation isn’t just about Duchenne. It’s about love and a tender connection between a mom and her son. It's about every parent who’s ever felt overwhelmed. Every caregiver who’s ever hidden their pain. And every person who’s ever had to keep it all together, even when they’re falling apart.

We have a quiet little gift for you at the end of the year - in this mini episode of Making Our Way, we’re reflecting on the gentle guidance and wisdom from past guests - beautiful reminders of the uniqueness of our journeys, and the profound impact of allowing the hard stuff in life to sit right there alongside adventure, love, and joy. Sometimes hope is simply the belief in possibilities—and there is always the possibility for new beginnings. As we head out of the holiday bustle and into the freshness of a new year, we hope you can take a few minutes to pause and reflect. Enjoy!

Sometimes hope is simply the belief in possibilities—and there is always the possibility for new beginnings. As we head out of the holiday bustle and into the freshness of a new year, we hope you can take a few minutes to pause and reflect. Enjoy!

We are coming to you today with a special update from one of our most popular guests.

We’ve talked to Tonya Dreher before and she is one of the most adventurous and genuine people that I know. If you haven’t heard her before, I encourage you to listen to her other episodes after you listen to this one - you don’t need to listen to them in order. I promise you it’ll be worth your time!

We recorded this episode with Tonya a few months ago when she was back in Nepal focusing on her work in the muscular dystrophy community. She is heading back to Nepal again soon -- working diligently to bring care to children who go without even the basics.

We are so so lucky to witness her creativity and her determination. She is literally changing the world one family at a time.

Today we’re joined by not just one guest, but SIX special people who not only joined us for this podcast, but who generously gave their time over the past 7 months to create something really special.

Each one of these guys is passionate about helping and empowering people with Duchenne muscular dystrophy to find meaning, purpose, and be aware of all the possibilities in life that they can explore.

They’re working with our Team Joseph staff to plan out the first conference exclusively for older adolescents with Duchenne. They’re taking time away from their work, spending time with their friends and family, from school, and from their individual goals to make sure we create something powerful for others living with Duchenne.

And they know a lot about this because they all have Duchenne themselves. It’s been incredible to see and share in their enthusiasm, dedication, and passion as this conference has come together – whether you have a connection to Duchenne (or not!) this conversation is a beautiful example of purpose, generosity, selflessness and the building of community.

Welcome to this very special episode featuring the Planning Committee behind our conference titled “What Now? Possibilities in Adulthood with Duchenne” -- a conference FOR people with Duchenne, planned BY people with Duchenne.

This is one of the most heartfelt and earnest conversations we’ve ever had. You can literally FEEL the spirit and heart of this group! Let’s get started.

Meet Darrel Nicklow, a 25 year old entrepreneur from Florida who has done more, seen more and been through more than most of us do in a lifetime. He was diagnosed with Duchenne muscular dystrophy before he turned 5 years old. At the end of seventh grade, Darrel’s heart began to fail and he was in the hospital for 400 days while he waited for a heart and recovered after the transplant. Now, he has come out on the other side as a young man with humility and a fierce desire to leave his mark. He is an incredible example of determination and hope.

Darrel graduated high school in 2016 and attended college to earn a degree in media design. In the meantime, he began the company Limitless Designs. He now does freelance graphic design work and loves making beautiful images for his clients. Initially, he wanted to be a chef, but had to pivot career paths because his muscles couldn’t keep up with the physically demanding work.

In our podcast episode, Darrel shares his journey from an athletic early childhood to being diagnosed with Duchenne muscular dystrophy, pivoting career paths, what his recovery process was like after his heart transplant and what his dream life looks like.

Tune in to hear about Darrel’s inspiring story of resilience, optimism and gratitude. Hear about his Youtube channel, which showcases his community’s underrepresented sports teams, talent and people.

After losing her home, her marriage, and her financial security, Molly had to start over in her 40’s. After beginning to rebuild her life – a new husband, a new job..... she was diagnosed with breast cancer.

While still struggling to make ends meet, in line at the food bank to feed her 5 children, Molly decided to address the need for families to have financial support while going through treatment....through that, the Pink Fund was born.

She shares how she went from a life of incredible privilege to one of struggling to get by....from “riches to rags” as she says, and ultimately to a life of purpose and connection.

Molly is the epitome of determination and heart. Her story is one of overcoming, and ultimately it’s a profound example of the power of community.