Riley Blevins went to work for Cure HHT in hopes of helping his son. But turns out, he wouldn't be the one doing the saving.

Riley Blevins, MBA, is the Senior Director of Global Community Engagement at Cure HHT, the only organization in the world funding advancements in education, treatment and research for HHT. Riley is a patient himself, and a caregiver to a young son with the disease.

Transcript

For some reason, I remember the time better than the exact date. It was mid‑December 2021, and my wife, she had just shaken me awake. Still blurry‑eyed and half asleep, I look over and I see these glowing red numbers coming from the alarm clock on the nightstand beside me. 4:55 AM.

I felt disoriented. You see, we were in this strange, dark, foreign‑feeling, odd‑smelling hotel room in downtown Cincinnati, which is about a fourish‑hour drive from our suburban Chicago home. We had driven there to visit Cincinnati Children's Hospital to have our firstborn son, JB, tested and scanned for a rare vascular disease called hereditary hemorrhagic telangiectasia, or HHT. The day before, he had a series of tests, an MRI, a chest CT, something called an echo bubble.

I look over to the other side of the bed, and I see my wife clutching her phone just inches from her face, the glowing screen lighting up the entire room, like one gigantic spotlight, and lighting up her face just enough to see the tears welling in her eyes.

"Is everything okay?" I asked, even though it felt like I already knew the answer.

"We got a notification in his patient portal," she said. "It's his brain.”

Those words, those damn words just hung in that hotel room.

No, this can't be happening, not to my son. I was just four months into fatherhood at that point. Still a two‑thumbed, amateurish diaper changer. I wanted to be worried about what outfit to put my son in for the Bears’ games on Sundays, not what these neurosurgeons were about to tell us in just a few hours.

I got out of bed and part of me wishes I didn't because that's when it became so real. I walked over to his portable crib tucked in the corner of that stupid, dark hotel room and I looked down to see this peanut of a human. My little buddy, angelically asleep, a pacifier gently pulsing in his mouth, blissfully unaware of the journey that awaited him.

The guilt in that moment, I truly can't describe it. It suddenly felt like I was breathing through a straw.

You see, many in my family have HHT. It's the second most common genetic vascular disease that causes bleeding in the United States. It's nearly three times as common as something like hemophilia, but, to this day, many doctors they've still never heard of it.

HHT, it causes misconnections between arteries and veins and various organs of the body, like the nose, the brain, the lungs, the liver. These misconnections, which are known as AVMs, you can almost think of them as knotted up, tangled up spools of yarn only comprised of blood vessels.

These AVMs, they can range in size from microscopic to absolutely massive, but they're all extremely fragile and prone to rupture. They're ticking time bombs. And when they go off, it's often catastrophic.

However, with HHT, oftentimes the only externally visible symptom that somebody has this is frequent and recurrent nosebleeds, meaning it's really difficult to tell if someone has this just by looking at them, even though it can be fatal.

The guilt. Again, the guilt I felt in that moment looking down at my son, it was all‑consuming. You see, HHT, it's an autosomal dominant genetic disorder, meaning if one parent is a carrier, that means there's a 50% chance their kid will inherit the gene.

My dad, my brother, my cousins, my aunts, they all have this disease. I myself have this. We all live fairly normal lives, though, I always thought. Sure, outside of having tissues crammed up our noses a lot, and I mean a lot.

I myself, I probably have three to five nose bleeds on a given day. I mean, on my wedding day, I remember standing in a front of a room filled with my family and friends and loved ones, and as my beautiful bride is walking down the aisle toward me, the thought going through my head, “I really hope I don't get a nosebleed right now.”

HHT, it took my uncle's life, but that was before our family had a diagnosis and a plan to treat this. “A tragedy like that would never, ever happen again,” I was told over and over again growing up, and I believed them. I did.

It's part of the reason why my wife and I made the decision to conceive naturally, after several failed IVF transfers without help from insurance.

I was blindsided looking at that MRI report on my wife's phone. You see, before we set off for that drive to Cincinnati, knowing my son having this was a possibility, we got several phone calls and texts from various members of the family. And the message, it was all the same. “It's going to be fine. Our case is mild. We don't have this bad. Brain AVMs, they don't run in our family.” I believed them. Again, I did. I'm embarrassed to say it, but I did.

I set off for that drive to Cincinnati virtually worry‑free. Ignorance is bliss, they say, and they're right.

Looking at that report on my wife's phone, my knees were shaking. Our appointment to review the results was at 8:00 AM later that same day and the wait, the wait in that stupid hotel room, the minutes felt like hours.

We paced, we cried, we screamed into pillows, we threw ourselves into becoming Google doctors trying to figure out what words like ‘nidus’ meant, and if 16 millimeters was big or small or scary or not. We entered moments of hope and phases of terror depending on what each new page or article said.

When that appointment finally did arrive, an army of people entered this tiny, stale, white room: doctors, genetic counselor, social worker There was this face on an iPad on wheels.

Eventually, a neurosurgeon sat down at a computer in the corner of the room wearing these heavy, dark brown work boots beneath his scrubs. He pulled up my son's scan and, as clear as day, there it was, this this giant‑looking gray mass atop his head.

I look over and I see my wife clutching our son in her arms, tears streaming down her cheeks, dampening her face mask. The guilt. Again, the guilt I felt. This was my fault. I gave this to him. I was mad. I was scared. I was angry. But I also remember feeling something else and that's thankful. Thankful our family has a diagnosis when so many others to this day don't.

It's estimated that up to 90% of HHT patients to this day remain undiagnosed. Thankful we knew to get him tested and scanned early. You see, these AVMs, they often don't present with any symptoms at all. Too many kids go to bed with a headache and never wake up because of a brain bleed. That could have been my son.

It was right there, right there in that moment, I knew I had to do something. I could not sit on the sidelines and do nothing to help my son navigate the situation I put him in. I wanted to help. I wanted to help him and help the thousands of other kids and families that had ever sat in a stale, white room, just like that one, and received the news we had just received.

But what? What could I do? I'm not a doctor. I'm not a scientist. I have a business degree. I work for a Fortune 500 beer company.

Later that day, on the car ride back home from Cincinnati, my wife was on the Cure HHT website on her phone.

“Hey, they have a job opening," she said.

I wish I could tell you that it was a straightforward decision. Countless pros and cons lists were made. There were sleepless nights, many of those, too. I cried over the decision. I did. Friends, family members, mentors all called me crazy for even considering leaving my corporate job for something like this.

“You're letting your emotions get the best of you,” I was told over and over again. But I felt this in my bones. I had to do this. So, I went to work for Cure HHT.

Eventually, as my son began treatments, we weren't getting the results we were hoping for. Marianne Clancy, the executive director at Cure HHT, eventually told us to get a second opinion.

A few months later, we boarded a plane headed to Phoenix, Arizona, one day before my wife's first Mother's Day, no less, where my son would undergo an hours‑long craniotomy to remove the AVM.

Several long days in the PICU followed. Cords were coming out of every inch of his body, it felt like. He clawed and he clawed at his IVs and central lines so often that they had to stitch them in so he wouldn't rip them out.

Eventually, as the months passed and our lives returned to normal and as my son’s scar began to fade beneath his hair, I wanted a new brain scan for myself. You know, just to be safe, despite doctors telling me, three different times, in fact, that this wasn't needed.

"No, no, no," I was told. “You already had a clear brain scan as an adult. The data tells us you never need one again. You're good. Stop worrying.” But I insisted.

And lo and behold, a year ago to the day, and I mean to the exact same damn day when we found out our little boy had a brain AVM, there I was, sitting in another stale, white room, another doctor sitting in front of another computer screen. No work boots on this this time. Pulling up a scan, learning there was a spot on my MRI. A brain AVM.

God, it was the worst kind of deja vu.

Eventually, I got on a plane and I flew to San Francisco to UCSF to have a metal frame drilled into my skull, a wire run up my leg through my heart and into my brain and have Gamma Knife surgery, a procedure where they blast the AVM with a highly concentrated beam of radiation to, hopefully, obliterate it over time.

On the plane ride back home, my wife tapped me on my shoulder. I paused whatever movie I was watching and took out an earbud.

She said, "You know, I always thought you were put on this earth to save that little boy of ours. Turns out, he was put here to save you.”

Thank you.