The Weight He Carried: How One Rare Dad Turned Heartbreak into Horsepower w/ Jeff Allen

I cried when I first interviewed Jeff. To be honest, I expected a polished media chat - maybe even a PR rep listening in, which usually takes some of the magic out of it. He’d just won $10 million on Beast Games and become the face of a viral story. Oh, and he’s not ugly.

I figured I’d get a polished pitch - but it wasn’t that. It was everything good and sturdy about a fellow rare disease parent. A dad. He was present, calming and a deep human being. The kind of person who speaks with his whole heart and makes you feel like you’ve known him forever. Jeff is the real deal.

He didn’t go on Beast Games to win. He went to show. To show the world what it means to be a parent in the rare disease community. To show what it looks like to carry a diagnosis 365 days a year and still keep showing up. To show that the power of a father’s love isn’t loud or flashy, it’s quiet, steady, and unshakably faithful.

Jeff didn’t just carry a backpack across California. He carried the weight his 7 year old son Lucas lives with every single day.

Lucas has Creatine Transporter Deficiency, a rare brain disorder that blocks creatine from reaching the brain. It leaves kids like him developmentally delayed, often nonverbal, and facing daily challenges most people never see. There’s no cure. No treatment.

When the diagnosis came, Jeff and his wife Jen were thrown into the rare disease world like so many others. Shaken. Grieving. Trying to navigate a system that wasn’t built for their child.

Lucas brought faith back into Jeff’s life. His other son Jack brought sobriety. These kids didn’t just change him, they saved him. Jeff says Lucas has taught him that there’s beauty in the bumps. That you don’t have to understand everything to love it. That real strength is being steady when life is anything but.

In 2024, Jeff applied for Beast Games, a global YouTube competition hosted by Mr. Beast. One thousand contestants competed for the largest cash prize in entertainment history: 10million dollars. Jeff wasn’t there for fame or money. He was there for Lucas.

He said, "I didn’t sign up for Beast Games just to win a competition. I did it to tell the world about my son. To show them what families like ours carry. The weight. The heartbreak. The hope. All of it."

Midway through the competition, Jeff nearly broke. Isolated. Exhausted. Homesick. He started to doubt why he was even there.

"I missed my family so badly. I started questioning everything. And then I thought about Lucas. How he wakes up every day in a world that’s not made for him and smiles anyway. I knew I had to keep going."

When the series aired in over 140 countries, Jeff’s inbox exploded. Researchers sent ideas. Scientists reached out. Strangers wanted to help. He didn’t just win a game. He created a signal flare for the entire rare disease world.

"This win was never just about me. It’s about all of us in the rare world who keep going even when no one’s watching."

After Beast Games, Jeff walked 365 miles from the Nevada border to the California coast. Each mile representing a day of the year his son lives with CTD. He wore a weighted backpack to symbolize that burden. He called it Ruck for Rare.

"I didn’t do it to prove anything. I did it because I needed the world to feel what this journey is like. The weight. The repetition. The resolve."

One of his fellow Beast Games contestants, Jeremy, a documentary filmmaker, offered to film the entire walk for free. A stranger donated to carry Jeff’s backpack for a few miles, easing his load. And then, one day, in Panamint Valley, Jeff stood on a mountaintop and wept.

"I never would’ve seen that view if someone hadn’t helped carry the weight. That’s what rare parenting is. You carry what you can. And then you let someone help. And suddenly you can see again."

"We don’t want pity. We want partnership. We want urgency. We want our kids to have time."

Before rare disease, Jeff thought strength meant grinding it out. Fixing what was broken. Showing no cracks. But rare fatherhood cracked him wide open and made him more.

"I used to think I had to fix everything. But when there’s no treatment or cure, you realize your job is to connect. To sit in the unknown with your child and still choose joy. Still choose love."

"I firmly believe Lucas chose this life. His soul chose this body. And it’s my job to figure out what he’s here to teach me."

Now Jeff spends his time reaching out to other rare dads. Not with answers. But with presence.

"Most of us just white knuckle our way through this. What we really need is to be seen. To be asked, 'How are you doing as a dad?' Not a caregiver. A dad."

"I want rare disease families watching Beast Games to see themselves in me. Not because I’m strong or smart, but because I kept showing up. I want them to feel less alone. I want them to know we can turn heartbreak into horsepower. And that I have really good hair." (Okay, he didn’t say that last part. I did.)

I have a personal review: My best friend called me after I published my interview with Jeff. Her 12 year old son, Parks - who trains for hours every day and works harder than most adults I know - had something to say. Parks is going to be in the NFL someday. Mark my words. He carries himself the way Jeff does - quietly, kindly, and with laser focus.

After watching Beast Games, Parks said, "He was fun to watch from the start. He wasn’t the top person I was rooting for in the beginning, but later he was. Everyone really trusted him and he never let them down, like being the quarterback of a football team. He stayed under the radar and was focused on one goal. You always knew what he was fighting for, and it made me think of my friend, Ford. You knew early on he wasn’t trying to win for himself. He was totally bet."

(For the "old" people - ‘bet’ means cool.)

Jeff made a 12 year old boy think of my son. This is such a beautiful example of what advocacy looks like when it’s done with integrity, focus, and love.

This isn’t a story about winning 10 million dollars. This is about a father who carried his child’s invisible weight, mile after mile, moment after moment, and kept showing up with his whole heart.

It’s a story about what happens when you walk straight into the pain and find beauty waiting for you at the top of the hill.

It’s a story about us.

And if you’ve ever carried something you didn’t choose, for someone you love more than life itself, then you already know.

This story is yours, too.

Behind rare disease data and breakthroughs, there’s a parent like, Jeff - moving mountains so the world will finally see what our kids are worth.

-By Effie Parks, CTNNB1 mom & storyteller at Once Upon a Gene. Bearing witness. Following starlight. Carrying the fuel.

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