An Open Letter
To the parent who just came home
If you've found this page today, there's a good chance you've only just walked through your front door.
Maybe you're still sitting in the car because you can't quite face going inside. Maybe you've already searched "Duchenne muscular dystrophy" more times than you can count. Maybe your partner is trying to stay strong while you both quietly wonder if life will ever feel normal again.
I know. Because I've been exactly where you are.
A few years ago I sat in that same place. One appointment changed everything. One conversation divided life into "before" and "after." I remember driving home feeling like the world had carried on while ours had stopped.
The questions came all at once. What does this mean? How long does my son have? Did I miss something? What should I do first? Is there a treatment? Are there clinical trials? Should I be changing his diet? What haven't I even thought to ask?
The hardest part wasn't just not having answers. It was not even knowing what questions existed.
If that's how you're feeling today, I want you to know something. You do not need to figure this all out tonight. You do not need to become an expert this week. And you certainly don't need to carry the weight of the entire Duchenne world on your shoulders by tomorrow morning.
Today, you're simply a parent who loves their child. That is enough.
Over the coming months you'll meet incredible healthcare professionals. You'll learn words you've never heard before. You'll slowly begin to understand genetics, physiotherapy, standards of care, treatments, research and clinical trials.
It won't happen overnight. It happens one conversation at a time. One question at a time. One small step at a time.
If there's one thing I wish someone had told me, it's this: the information is out there, but it isn't always easy to find or easy to understand. That's why I created DMD Pathways. Not to tell you what decisions to make. Not to replace your healthcare team. But to help families like ours understand the journey a little more clearly, ask better questions, and know what pathways may exist as your child's journey unfolds.
You don't need to read everything today. In fact, I'd encourage you not to. Close the laptop. Go and sit with your child. Give them a hug. Play a game. Watch a film. Because despite everything you've heard today — they're still the same little person you woke up with this morning. And those moments together still matter more than anything.
When you're ready, we'll be here.
From one Duchenne dad to another family beginning their journey,
Jamie Tierney