Navigating EBF3-HADDS as a Family of Six

Written by Santana Green

August 14, 2026

If you happened to see our family out and about, you’d see a group of six moving through the world with all the usual noise, energy, and motion that comes with a big household. But beneath the surface of our daily routine, our life looks a little different than the "typical" family dynamic.

Our story is wrapped up in love, resilience, constant calendar balancing, and a journey we never quite anticipated but one that has reshaped who we are for the better.

On February 27, 2024, when Andrew was just seven months old, we received the news that would redefine our path. Andrew was diagnosed with EBF3-HADDS (Hypotonia, Ataxia, and Delayed Development Syndrome), a rare genetic condition.

Receiving a rare diagnosis for your baby is a moment where time feels like it stands still. Suddenly, the milestones you expected get rewritten, and a brand-new vocabulary enters your daily life. It was the moment our path shifted from standard parenting to navigating the deep, complex world of rare disease advocacy and caregiving.

Being a medically complex family of six means our calendar doesn't look like everyone else’s. Our schedule is packed with specialists, therapy sessions, and medical checkups. Unexpected hospital admissions are a reality we’ve learned to adapt to, shifting our routines at a moment's notice. Making sure every child feels seen, loved, and supported while managing Andrew's intensive care needs requires teamwork, flexibility, and a whole lot of heart.

"Naturally, living this way creates a paradox that every rare disease family comes to know intimately a constant balance between unexpected isolation and profound connection."

The loneliness of a rare diagnosis doesn't always happen all at once; it often builds quietly over time. Life for the people around you continues at a familiar rhythm: soccer games, weekend trips, and casual playdates while your world revolves around therapy schedules, medication logs, and hospital rooms. Even well-meaning friends don't always know what to say, and when medical needs force plans to get canceled at the last minute, invitations can begin to taper off. It’s easy to feel like an observer in a world everyone else gets to participate in effortlessly.

As heavy as the isolation can be, the flip side is equal parts powerful and unexpected. A rare diagnosis strips away the superficial and introduces you to people who see you, hold space for you, and walk alongside you. Connecting with another parent in the rare disease community—whether online or in a hospital waiting room—is unlike any other friendship. You don't have to explain the jargon, justify your fatigue, or downplay your anxiety. They just get it.

"Our family may not fit into a standard box, but the deep love, resilience, and community we've built together is something we wouldn't trade for anything."

Having Andrew in our lives and navigating EBF3-HADDS has taught our whole family how to love deeper, celebrate the smallest victories, and find beauty in the unconventional. Our kids are growing up with a level of empathy, compassion, and understanding that only comes from living this life side by side.

We aren't a typical family of six, and that’s okay. We are in this together, and every step of this journey—the tough hospital days, the quiet moments of isolation, and the bright, triumphant ones with our rare disease tribe—is part of what makes our family who we are.

Through every hospital stay, endless appointment, and therapy session, there is one person who sets the tone for our entire family: Andrew.

It’s easy to look at a medical chart or a rare diagnosis like EBF3-HADDS and see a long list of challenges. But when you look at Andrew, you don't see a diagnosis—you see pure resilience, incredible courage, and a spirit that brightens every room he enters.

Going through frequent medical checkups, blood draws, and hospital admissions would wear anyone down, but Andrew faces it all with a bravery that leaves us in awe. He takes on tough days with a grace that seems far beyond his years.

Every single milestone Andrew reaches is hard-won. He works so hard in his therapies, pushing through fatigue and physical hurdles with a determination that inspires everyone watching him. He doesn't give up, so we don't either.

Beyond the strength and bravery, Andrew is just completely amazing. His smiles, his laughter, and his joyful personality have a way of putting everything into perspective. He reminds us daily of what truly matters.

Andrew isn't just navigating EBF3-HADDS—he is teaching the rest of our family how to be strong, how to love deeply, and how to find joy in every single win, no matter how small. He is the heart of our household, and we couldn't be prouder to be his family.

To the parent who has just received a rare diagnosis for their child: first, take a deep breath and give yourself permission to feel every emotion that comes with this news. There is no manual for this path, so extend grace to yourself on the heavy days, and remember that you don't have to learn all the medical terminology or master the complex scheduling overnight. Your most powerful role is simply being their parent—loving them fiercely, celebrating every small victory, and being their voice. Lean into the rare disease community, because while this journey can feel lonely, there is a whole world of parents who understand your heart, are eager to welcome you, and will stand beside you. Trust your instincts, take it one day at a time, and remember that your child’s diagnosis describes a condition, but it will never define their capacity for joy, love, and the incredible impact they will have on your world.

A note from the HADDS Foundation:

One of the greatest strengths of the HADDS community is that no one has to navigate this journey alone. Whether you're looking for practical advice, shared experiences, or simply a place where others understand, there are many ways to stay connected.

• Join the EBF3-HADDS Foundation Facebook page for Foundation news, research updates, events, and community announcements.

• Connect with other families in the following Facebook groups:

  • Private HADDS Community – for individuals with HADDS and their immediate family members.

  • Public HADDS Community – open to anyone interested in learning more and connecting.

  • Private 10q26 Deletion Community – for individuals with 10q26 deletion syndrome and their immediate family members.

Wherever you are on your HADDS journey, we hope you'll join the conversation and become part of this supportive, global community.