Matthews Journey

09/13/2026

What is one thing you wish doctors, teachers, therapists, or other professionals truly understood about raising a child with a disability?

Sometimes families spend so much time explaining, correcting assumptions, and advocating just to have their child's needs taken seriously.

👇 Parents and caregivers—what do you wish professionals understood without you having to fight to explain it?

09/12/2026

🧠 Autism is a spectrum—and that doesn't mean a straight line from “mild” to “severe.”

Autistic people can have completely different combinations of strengths, challenges, communication styles, sensory needs and support needs.

Someone may communicate very well but struggle significantly with sensory overload. Another person may need substantial communication support while excelling in other areas.

Support needs can also change depending on the environment, situation, stress level and stage of life.

♾️ There is no single way to “look autistic.” Every autistic person is an individual first.

09/11/2026

09/03/2026

Long before we knew words like "Duchenne," "CK levels," or "genetic testing," our story began with two tiny babies. Matthew has a twin sister named Addison. My pregnancy was considered healthy. Other than knowing I was carrying twins, everything seemed to be going well. Like any expectant parent, I spent those months imagining the future. I pictured birthday parties, first days of school, family vacations, and watching my two babies grow up together. Then, at 34 weeks, everything changed. My water broke six weeks early. Premature twins aren't uncommon, but it still wasn't the ending to my pregnancy that I had imagined. Suddenly everything moved so fast. There were doctors, nurses, bright lights, and more emotions than I could process.

When Matthew was born, he wasn't breathing. He was born in full cardiac arrest. No parent is ever prepared for that moment. The excitement of finally meeting your baby is instantly replaced with fear. You don't know what's happening. You don't know what comes next. You just hope with everything you have that your child will survive.
At the same time, Addison had her own battle. She was born with hip dysplasia, meaning her hip joint hadn't developed properly.

Instead of bringing two healthy babies home, we began our journey in the Neonatal Intensive Care Unit. For three weeks, the NICU became our world. Every day was filled with monitors, medical equipment, and waiting. Waiting for Matthew's heart to stabilize. Waiting for both babies to gain enough weight. Waiting to hear that they were finally strong enough to come home.
Eventually, that day came.

We packed up our tiny babies and walked out of the hospital believing the hardest part was behind us. For a little while, life felt normal. We settled into life with newborn twins. Sleepless nights became routine. Bottles, diapers, tiny clothes, and endless cuddles filled our days. I was exhausted, just like every new parent. We thought we had survived the biggest scare of our lives.

We had no idea that our journey was only beginning.

Looking back now, it's impossible not to wonder if some of those early struggles were pieces of a puzzle that hadn't been put together yet. At the time, though, we were simply grateful to have our babies home.

Matthew wasn't "the little boy with Duchenne." He was just my son. And Addison wasn't "the healthy twin." She was simply his sister—his built-in best friend from the very beginning.

We didn't know what the future would hold. We just knew we loved them more than words could ever describe.

09/02/2026

🧬 Duchenne is caused by a lack of functional dystrophin.

Dystrophin is a protein that helps protect and stabilize muscle cells when muscles contract and move.

In Duchenne muscular dystrophy, changes in the DMD gene prevent the body from making enough functional dystrophin. Without that protection, muscle fibers are repeatedly damaged and gradually replaced by fat and connective tissue.

This is why Duchenne affects much more than someone’s ability to walk—it can eventually affect the heart and breathing muscles too.

💚 Duchenne is a whole-body disease, and comprehensive care matters.

08/21/2026

You are beyond loved 💚💚💚

08/20/2026

ALWAYS trust your gut 💚💚💚

08/20/2026

Before I tell you about doctors, tests, diagnoses, and everything that changed our lives, I want you to meet my son. His name is Matthew.
Matthew is funny, caring, incredibly smart in his own way, and has a smile that can brighten even the hardest days. He's also a twin. His sister, Addison, has been by his side since the day they were born, and the bond they share is something truly special.

Today, Matthew is living with Duchenne muscular dystrophy, along with Autism Spectrum Disorder Level 1, ADHD, and OCD. Those diagnoses don't define who he is, but they have shaped our family's journey in ways I never could have imagined.

In January 2022, our family received the news that every parent hopes they never have to hear. Matthew was diagnosed with Duchenne muscular dystrophy, a rare genetic disease that causes muscles throughout the body to weaken over time. There is currently no cure. That phone call changed our lives forever.

At first, I wasn't sure whether I wanted to share our story publicly. Some parts are painful to relive. Some still make me angry. Others still bring me to tears. But I kept coming back to one thought. If sharing our journey helps even one family feel less alone... if it helps one parent trust their instincts... if it encourages someone to ask one more question or seek a second opinion when they know something isn't right... then every difficult memory will be worth sharing. This isn't just a story about a diagnosis. It's a story about a little boy who continues to smile through challenges most adults couldn't imagine. It's a story about a twin sister whose love for her brother has amazed me since they were babies. It's a story about family, heartbreak, hope, resilience, and learning to celebrate victories that many people take for granted. It's also the story of becoming an advocate. There were times I was told everything was fine. There were times I was told to wait. There were times I questioned my own instincts because I trusted the professionals more than I trusted myself. Looking back now, I wish someone had told me that it's okay to ask questions. It's okay to seek another opinion. It's okay to keep fighting when you know something isn't right.

Over the coming weeks, I'm going to take you back to the very beginning. We'll start before the diagnosis. Before the specialists. Before we even knew the word "Duchenne." You'll meet Matthew as the happy little boy he has always been. You'll meet Addison. You'll follow every step of our journey—the victories, the setbacks, the moments that broke us, and the moments that gave us hope.

Thank you for choosing to follow Matthew's Journey.

I hope that by sharing our story, you'll come to know the incredible little boy behind the diagnosis. Because before Matthew became "the little boy with Duchenne," he was simply Matthew.

And that's where our story begins.

08/19/2026

08/18/2026

🧬 Duchenne is genetic — but it isn’t always inherited.

Duchenne muscular dystrophy (DMD) is caused by a change in the DMD gene, which provides instructions for making dystrophin, a protein that helps protect muscle cells.

While Duchenne can be passed down through families, about one-third of cases are caused by a new genetic change, meaning there may be no previous family history of Duchenne.

💚 Duchenne awareness matters. Knowledge leads to earlier recognition, better care, and stronger advocacy.