As you are aware, Owen has been battling his B-Cell ALL (Leukemia) for the last 8-months, and now we’ve learned he’s been burdened with something unimaginable this whole time—something that’s been with him since birth.

An analogy...

To make it easier to understand, let’s say his Leukemia are a family of fierce tigers continually breeding and preying on Owen (corrupted/cancerous B-Cells duplicating and crowding out healthy cells) — making us focus on not only eradicating the tigers hunting him, but also destroying the forests where their dens are (killing all immune cells to eradicate B-Cells and start anew). But unbeknownst to us this whole time, there’s also been a dragon lurking in the shadows. A silent, invisible, and extremely rare threat we didn’t even realize was possible.

Like in the movie Dragonheart, this dragon is connected to Owen in a way that can’t be undone by force (surgery) or magic (treatment). They share the same life force — what happens to one, happens to the other. They’re one and the same. But every minute, this dragon slowly drains Owen’s energy to stay alive, like a parasite, which primarily comes from the deterioration of his muscles, fiber by fiber. And just like in the movie, the dragon can’t be killed—only slowed—because killing the Dragon would also take Owen. The best we can do is having our army of doctors give Owen a weekly dose of magic (treatment) which in turn, slows the Dragon’s metabolism. But these spells come at an astronomical price: approximately $1.5 million a year.

As if that wasn’t enough, the weakened tiger population (Leukemia) is still breeding and preying on Owen, too. To complicate things even more, the burning of the forests where the tiger’s dens are have also burned this invisible dragon. Because the dragon’s life and health is tied to Owen’s, injuring it means Owen has to pay the price — thus the Dragon taking more of Owen’s precious energy to recover.

And now? That’s starting to show.

Owen can’t stand for long periods or climb stairs. When he’s tired, he trips over his own feet. Standing up from the floor isn’t possible without using his hands to push himself up from his thighs. These symptoms were always going to come with this dragon, but not this fast.

From here on, our army of doctors will have to try new, less conventional approaches to fight the hoard of tigers and keep the dragon subdued. We can’t risk further injuring the dragon because every blow it takes lands on Owen, too.

And yet, even with all this effort, we know there’s no beating the dragon. The heartbreaking truth is that Owen’s life will be tragically short. If we’re lucky—really lucky—he might make it to his late teens or early twenties — longer possibly if a new miracle spell is found. But eventually, the dragon will drain so much energy that Owen won’t have enough strength left to breathe or keep his heart going, killing the Dragon and taking Owen with it.

Until that time, there are so many things Owen won’t get to experience. He’ll never run through a park or climb a jungle gym. He won’t play soccer or basketball with friends, or feel the thrill of riding a bike or skateboarding down the street. Hiking trails, spontaneous sleepovers, and unplanned adventures—those aren’t in the cards. He’ll never know what it’s like to dance at prom or drive a car. He won’t ride roller coasters or experience the joy of teaching his own child how to tie their shoes.

And even if Owen pushes himself to do activities, and he pushes himself too hard, he will provoke the Dragon to take even more of his energy, expediting his deterioration even further.

And in a year, two, or three—if we’re lucky—it’s likely Owen won’t be able to walk at all. He’ll need a wheelchair to get around.

So, what is this hypothetical dragon that’s taking so much from our precious Owen?

It’s called Duchenne Muscular Dystrophy.

Duchenne Muscular Dystrophy (DMD) is a rare genetic disorder that messes with the muscles, making them weaker over time. It mainly affects boys because it’s tied to the X chromosome, which they inherit from their mother—or it can randomly occur during fertilization, like an unpredictable genetic glitch.

Either way, Owen’s DNA is missing a critical piece of the blueprint needed for his cells to make a biological machine to produce dystrophin (specifically deletions of Exons 46-51). This protein works like a shock absorber and barrier for muscles. Without it, the muscles don’t just work less efficiently—they’re left defenseless. Naturally occurring calcium seeps into the muscle damaged lining, and breaks them down from the inside out.

Just like in our dragon analogy, there’s no cure for Duchenne right now. But treatments like physical therapy, certain medications, and even surgeries can help manage symptoms and improve day-to-day life.

Now, layer this condition with Owen’s B-cell Acute Lymphoblastic Leukemia (ALL), and you’ve got a medical situation that’s beyond comprehension.

DMD itself is incredibly rare, affecting about 1 in 5,000 boys. B-Cell ALL is a blood and bone marrow cancer that’s also uncommon, but it’s the most common type of childhood cancer, with about 3,000 new cases diagnosed in the U.S. each year.

But here’s the kicker: having both DMD and B-Cell ALL at the same time is so rare there’s practically no documentation or case studies for it. It’s like a one-in-a-billion genetic and environmental overlap, with a side of “science hasn’t figured this out yet.” There are some suggestions that the DMD and Leukemia might be linked to women who are predisposed to have twins. And this predisposition is something Melissa has.

Regardless of the cause, this makes treatment a giant puzzle, because what helps one condition can hurt the other. For example, chemotherapy is the standard for treating B-Cell ALL, but some chemo meds can make muscle weakness worse—or even damage the heart, which is already a weak spot for DMD patients. On the flip side, managing DMD often involves corticosteroids, which help slow down muscle damage but also suppress the immune system, potentially interfering with leukemia treatments.

And it doesn’t stop there. DMD makes patients more vulnerable during surgeries and infections—both of which are big risks when you’re dealing with Leukemia. It’s like a high-stakes balancing act that requires a dream team of specialists: neurologists, oncologists, cardiologists, and more, all working together to create a custom treatment plan for Owen.

An emotional look at Duchenne:

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Why didn’t anyone catch this earlier?

Owen’s delayed diagnosis of Duchenne Muscular Dystrophy (DMD) boils down to a mix of overlapping symptoms and some major red herrings tied to his leukemia and its treatment. When he was first diagnosed with B-Cell leukemia back in February, the signs—swollen lymph nodes, trouble walking, and leg pain—fit the profile of leukemia perfectly. No one had a reason to think something else was going on.

Then came the leukemia treatments, which included heavy-duty medications like dexamethasone and vincristine. These are known for their side effects, like muscle weakness, neuropathy, and even drop foot. So when Owen started showing those symptoms during treatment, it seemed logical to chalk it up to chemo side effects, not a separate condition.

Fast forward to September—seven months into his leukemia treatment and now on a different medication called Blinatumomab (or Blinna). That’s when things started to stand out. Owen’s motor skills were getting worse, and the mild drop foot wasn’t improving. But here’s the thing: Blinna doesn’t cause muscle weakness or mess with liver enzymes, and yet Owen’s liver enzymes were still elevated. That raised a big red flag, leading his doctors to refer him to a GI specialist and physical therapist.

The GI specialist we met with found no abnormalities with his liver specifically, stating that the elevated numbers are not indicative of any problems other than he’s getting treated for Leukemia. This was a big relief to us.

But during the PT assessment on November 7th, Owen couldn’t climb stairs, use his core and legs to lift himself onto a platform, or stand up from lying down without showing the classic Gower maneuver—where kids use their hands to “walk” themselves upright. That’s a hallmark sign of muscular dystrophy—and signs that we seen but assumed were temporary corrections due to side effects. But no, there weren’t side effects, but symptoms pointing to an undiagnosed neuromuscular condition.

For the physical therapist, DMD became the primary suspect. It tends to show up in kids between 2 and 7 years old with symptoms like delayed milestones, muscle weakness, and, yes, the Gower maneuver. There’s a milder version called Becker Muscular Dystrophy (BMD), but that usually doesn’t present until adolescence or adulthood and progresses more slowly.

To confirm the diagnosis, Owen’s medical team ordered two key tests: a blood test to check his creatine kinase (CK) levels and genetic testing. For context, CK levels in healthy kids are usually under 150-250 U/L, even if they’re dealing with leukemia. Owen’s CK levels were off-the-charts—over 10,000 U/L—which is basically a flashing neon sign for DMD. Genetic testing sealed the deal on November 22nd.

So, what’s Next?

Owen will turn five this coming May, and according to our physical therapist—who has extensive experience with Duchenne Muscular Dystrophy (DMD) patients—we’re going to see the progression become worse sooner than later. By the time Owen is six or seven, he’ll likely need a wheelchair to maneuver. That means we’ll need to start making changes to our home, like adding ramps and making the bathrooms and our vehicles more accessible for him.

DMD doesn’t just affect muscles—it also impacts the heart and lungs as kids get older. Owen will need preventative medications and might eventually require non-invasive ventilation to help him breathe. There are gene therapies out there, even experimental ones, that offer a sliver of hope for slowing down the disease. But with Owen’s leukemia in the mix, qualifying for these therapies could be tricky.

If Owen beats leukemia—and we’re holding onto hope that he will—his journey will still come with challenges. DMD makes bones and muscles weaker over time, and his immune system will need close monitoring. His oncologists and neurologists will have to work together to balance his treatment plans and keep him as strong as possible, and prevent relapse.

Through all of this, the one thing that gives us strength is Owen’s spirit. Even after everything he’s been through in just the last eight months, his mental and emotional resilience shines so brightly. But as parents, our hearts ache knowing he’s starting to notice the differences between himself and other kids. He’s already asking why he can’t jump or play like his cousins or friends at school, and it’s hard to find the words to explain something so big to someone so little.

One moment that really hit us was when Owen was playing with his baby doll. He asked Devin to help strap the doll into a stroller so he could take it on a walk.

Later, Devin broke down in tears, thinking about how Owen will never get to experience the joy of fatherhood himself. Moments like that are gut-wrenching, but they also remind us to cherish the time we have and focus on giving Owen the best life possible.

Today, we’re meeting with neurology for the first time to get a clearer picture of what’s ahead and how we can help Owen thrive in the time he has. While he faces these terrifying tigers (his leukemia) and an hungry and unrelenting parasitic dragon (DMD), we’re not giving up. We’ll stay on the lookout for cutting-edge treatments and support systems. But most importantly, we’re going to make every single moment with Owen count, and give him the very best life possible for as long as we have him here.

Stay Connected

We’ll be sharing monthly journal entries to keep everyone updated, with weekly check-ins through our email newsletter. If you’re not signed up yet, we’d love for you to join—it’s the best way to get notifications about new posts. And if you’re not already following us on Facebook or Instagram, please do! We’re sharing photos of Owen from before his diagnosis and throughout this journey.

Thank you for walking this path with us. Your support means the world.

P.S. We've updated this website to add pages which explain what B-Cell Acute Leukemia and Duchenne Muscular Dystrophy is, as well as a page dedicated to his treatment plan that includes a live calendar to see our appointments. Finally, we've updated the page telling his story to reflect the new tragic diagnosis.