So, a lot has happened over the last few months, and we wanted to take a minute to catch you up—especially now that we’ve learned something new about Owen that’s changed everything.

As you might know, Owen has been in treatment for B-Cell Acute Lymphoblastic Leukemia (ALL) for the past 8 months. It’s been a wild ride—chemo, hospital stays, meds, side effects… all of it. But recently, we found out that Owen has actually been carrying another condition since birth—one that makes everything even more complicated.

It’s called Duchenne Muscular Dystrophy (DMD), and it’s a rare genetic disorder that causes muscles to weaken and break down over time. And unfortunately, it’s progressive and currently has no cure.

To be totally honest, this hit us hard. DMD means Owen won’t be able to do a lot of things other kids can. He won’t get to run around the playground, climb jungle gyms, ride bikes, play sports, or dance at prom. At some point—likely by the time he’s 10 to 15—he’ll lose the ability to use his legs entirely and will need a wheelchair. That’s already starting to happen. We’re seeing signs.

We also know DMD will affect his heart and lungs as he gets older, and it means he won’t be able to have kids of his own or grow old the way we all imagine for our children. And the hardest part of this: statistically, those affected by Duchenne rarely reach their 20’s or live much longer after.

It’s the kind of news that stops you in your tracks.

What is DMD?

Duchenne is a genetic condition that mostly affects boys and is caused by a mutation in the gene responsible for producing dystrophin—a protein that basically protects muscles from damage. Without it, muscles break down faster than the body can repair them. In Owen’s case, he’s missing exons 46–51, which means that vital dystrophin protein just isn’t being made at all.

It’s incredibly rare—affecting about 1 in 5,000 boys.

So how does this connect to leukemia?

It doesn’t. They’re complete different and not at all related. But to have both DMD and leukemia? That combo is so rare it’s barely documented. There are almost no known cases, and it’s left his doctors scratching their heads.

And the real kicker? Treatments for one condition can make the other worse. For example: chemo is essential for treating leukemia but can further weaken muscles and damage the heart—major issues for someone with DMD. Meanwhile, treatments for DMD (like corticosteroids) can suppress the immune system and interfere with leukemia treatment.

It’s a crazy balancing act, and it’s going to take a whole team of specialists—neurology, oncology, cardiology, physical therapy, and more—to keep Owen safe and as strong as possible.

Why wasn’t this caught earlier?

That’s a totally fair question. The short answer is: his leukemia symptoms overlapped with signs of DMD, and the treatment side effects masked what was really going on. When Owen was first diagnosed back in February, the leg pain and trouble walking made total sense for leukemia. And once he started treatment—especially with meds like dexamethasone and vincristine—those drugs came with their own side effects, including muscle weakness and neuropathy.

So when Owen showed drop foot and had a hard time with stairs, it seemed like a reaction to the chemo.

It wasn’t until September, when he switched to a different treatment (Blinatumomab, or “Blinna”), that things didn’t quite add up. Blinna doesn’t cause muscle issues, and yet Owen’s weakness was getting worse. His liver enzymes were also still elevated, which shouldn’t have been happening at that point.

A GI specialist ruled out liver disease, but it was during a physical therapy evaluation in November that the big red flag appeared. Owen couldn’t climb stairs, stand up off the floor without using his hands (the Gower sign), or lift himself onto a platform—all signs that pointed to something much deeper than chemo side effects.

From there, doctors ordered a CK blood test and genetic testing. A healthy CK level is usually under 250 U/L. Owen’s was over 10,000.

That’s textbook Duchenne.

Genetic testing confirmed it on November 22.

What’s next for Owen?

Owen turns five this May, and based on everything we know, he’ll likely need a wheelchair within the next year or two. We’re already looking at modifying our home—ramps, bathroom access, even changing vehicles—to support what’s coming.

We’ll also be adding a whole new layer to his care, including cardiology and pulmonology, since DMD can eventually impact heart and lung function. There are some gene therapy options in the pipeline—some even available now—but qualifying for those while he’s undergoing leukemia treatment makes things tricky.

The hope is that if Owen can beat leukemia—and we really believe he can—we’ll have more options available to help him manage the effects of DMD. It’s not about “fixing” everything, because we can’t. It’s about giving him the best, fullest life we can.

Where our hearts are right now

The emotional part of this is something we’re still figuring out day by day. Owen’s still so young, but he’s starting to notice he’s different. He’s already asking why he can’t jump like the other kids or why he gets tired faster. And that’s hard to explain.

One moment that really stuck with us was when Owen was playing with his baby doll and asked Devin to help strap the doll into the stroller so he could take it for a walk. Something so sweet—and yet, it hit like a punch to the gut. Because one day, he won’t be able to do that on his own.

Later that night, Devin cried, thinking about how Owen won’t get to experience fatherhood or a future that includes many of the joys we take for granted. It’s those little moments that bring both grief and clarity—reminding us to savor everything, even the messy, imperfect, ordinary days.

Looking ahead

We’re meeting with neurology today to start building a full plan for Owen’s care. It’s going to be a long road, with more challenges than any family should have to face—but we’ve got an amazing team, and more importantly, we’ve got Owen. This kid is a warrior. His spirit is strong, his smile still lights up every room, and we’re going to make sure he feels loved, included, and empowered every step of the way.

We’re also committing to regular updates for anyone who wants to follow along. If you’re not signed up for the newsletter yet, we’d love to have you. And if you’re on Instagram or Facebook, we’re sharing more there too—photos, videos, and little moments from our day-to-day life with Owen.

Thank you, truly, for being part of this journey. Your support means everything.