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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.

In our last episode, Nate Plasman shared his story about his little boy’s diagnosis with a rare disease and the battle to get him into a clinical trial. Today, we’re looking at what can happen once that drug is approved by the FDA and doctors can begin to prescribe it. I’m talking to 2 families who live on opposite sides of the country, but were brought together in the fight of their lives. For so many of us facing the unimaginable – a loved one battling an illness or disease for which there is no cure – it seems that an approved treatment could be the answer. But oftentimes, that approval is the beginning of another heart-wrenching fight. The fight for access to that treatment. Our story today focuses on the June 2023 FDA approval of Elevidys – the first approved gene therapy for 4 and 5 year olds with Duchenne muscular dystrophy. Heather Hay, and Phil and Jena Huber share their families’ experiences, their deep commitment to helping other children get access to a treatment, and their fierce belief that a community can drive change. This is the individual and unique experience of these 2 families and our focus is not so much on the treatment itself as it is on what families go through and how love can move mountains.

We’re going to kick off the New Year with this really special episode. If you need a dose of hope and encouragement – you are in the right place! I’m talking with Nate Plasman. Nate and his wife are parents to 3 kids and when their youngest, Andrew, was still a baby they started to notice that something wasn’t right. When Andrew was diagnosed with Duchenne muscular dystrophy, amidst the devastation and fear, Nate became a fierce advocate for his son and moved mountains to get him into a clinical trial. He was instrumental in changing the course of his own son’s life, and now he’s determined to do the same for other kids. I do want to say that this is one father’s – and one child’s – story. This is about their unique experience in a clinical trial, and one particular company’s treatment that is the first approved gene therapy for Duchenne. Every experience is personal and there are and will be so many stories to tell – I hope that today you enjoy hearing about this sweet family. This is a special story of fear, of faith and doubt, of dreams, and miracles.

Today I’m talking with Dr. Natalie Truba. Dr. Truba is a pediatric psychologist at Nationwide Children’s Hospital in Columbus, Ohio. I wanted to talk to Natalie about the challenges of living BEYOND a diagnosis or illness....how do we deal with that intense medical part of our lives or the life of a loved one, while still really living and not being consumed by a medical condition. We’re talking about the bravery it takes to acknowledge struggle, to look at mental and emotional health and how it’s woven into a physical diagnosis, and how to plan for a future for our kids with medical conditions (hint...they should be a part of it!). And we’re also talking about how valuable hardships and failures are, and Natalie talks about the beauty of having dreams – not necessarily attaining them – but just pursuing them. I’m telling you – she is a pediatric psychologist, but her work, her words, and her heart for helping families have the best quality of life is relevant to everyone – parents, loved ones and patients alike.

Today's conversation is with an amazing writer and a fierce advocate, Kate Washington. In Kate’s professional life, she is a food writer in Sacramento. Recently, she wrote her first book, titled “Already Toast” – it may seem like a nod to her writing career focused on food, but it’s actually a reference to a world she was thrust into – the world of unexpectedly and suddenly becoming a caregiver. When Kate’s then husband was diagnosed with an aggressive form of cancer, they had 2 young kids and busy careers, and Kate added full-time caregiver to her responsibilities. She’s taking us inside the expectations, the demands and the heartache of caregiving in America. Through her deeply personal story, she’s shining a light onto the unrealistic expectations put on families – whether caring for an adult or child in the household. She talks about the isolation, the lack of training – she was given a handout (!!) and 20 minutes of training to learn how to be a full-time caregiver which included administering 35 medications a day, some of which were inserted into an IV. One in 6 people in our country are caregivers, and the average number of hours per week are 20. This is actually now being looked at as a public health issue and for good reason. If we’re not already, most of us will be caregivers for a loved one at some point. Kate’s experience is relevant and it’s riveting. It’s a story of bravery, dedication and grit.

Lauren Fritz is mom to 2 boys with Duchenne muscular dystrophy, and she’s a therapist in private practice. She worked for years as a trauma and grief counselor, helping families deal with heartache, loss and catastrophic medical issues. But today, she’s talking about her deeply personal story of being a caregiver to her 2 sons for the past 15 years, and she’s sharing how she’s navigated her own initial reaction to becoming a caregiver and how their lives have evolved as her sons’ disease progressed. Lauren has a beautiful perspective on what she calls the spirituality of caregiving, and moving from a place of repulsion and fear about what lay ahead to a place where she can tend to her own needs and savoring moments every day. Through giving us an intimate look into her own life – both the joys and the struggles -- she shares so much comfort. And most important, I think she helps all of us feel like, no matter what we’re making our way through right now, or who we’re giving some extra care to, we will find our way through uncharted territory.