The Path with Becky Quick: A Beast of a Journey 3/2/26

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0:59Lucas, his soul, chose this body, chose us as parents.

1:07For the world to care about rare diseases, people's hearts need to be changed. You know, we can't just have money be thrown into the problem. 831 is blindfolded and can no longer see what's going on. Beast Games application, Mr. Beast. I don't have a job right now. Like, I think I can apply. 10 million dollars! It's all a miracle. But it's also tragic to think that I have to go on the largest game show ever for people to know about my son. Keep going. Good job. Great job, Bear.

1:42I'm Becky Quick. Welcome to The Path from CNBC Cures, a podcast series about the people, the struggles, the science, and sometimes, yes, the miracles of rare disease. Bye. Bye. Yeah. I'm a mom of a child with a genetic disease. My nine-year-old daughter, Kaylee, has one of the thousands of rare genetic conditions, diseases, disorders, illnesses, that are lurking in the basic code that makes us who we are. Kaylee's condition is called Syngap-1. She's part of a very small patient group. There are only about 1 ,700 other people in the world with this diagnosis. Essentially, she only produces about half of the Syngap protein that's needed for brain development.

2:25That means that she has seizures, developmental delays, and intellectual disabilities. She also has autism and struggles to communicate. Six. Good job. Seven. If you've been listening to our podcast or watching our videocast on YouTube, thank you. Thank you so much for opening your hearts to my family and our daughter's story. and thank you for sharing your stories as well to our CNBC Cures email inbox on social media and in the YouTube comments. We really love hearing from you. My guest today has a wild story of what happens when you say what the heck and you do something unexpected for a really good reason.

3:06Most people know me by Jeff. Really? Okay, good. Then I'll call you that. I'm Rebecca, but I go by Becky because I'm Rebecca when I'm in trouble with my mother. Jeffrey Allen, also known as Player 831, went on a game show fronted by content creator Mr. Beast. And he won. Jeff Allen, a dad of two boys, Lucas and Jack. Lucas has a rare disease called creatine transfer deficiency. It was all done in the name of raising awareness for, or potentially curing, rare disease. We found out in 2019, and ever since then we're trying to spread the word. I was crazy enough to sign up for the Beast Games, the largest competition show in history of the world, to tell a story.

3:58Jeffrey Allen took an extreme route to tell his family's story. Beast Games Season 1 attracted 50 million viewers in its first 25 days streaming on Amazon Prime. He joined us on Squawk Box last year to talk about the experience and the public attention. It all sounded very familiar. Our stories and challenges about parenting a child with a rare and specific condition sort of intertwine. And like many rare disease families, it all started out pretty great. You know, I always knew I wanted to be a dad. And so then you have your two sons. And what did you think about your family life at that point?

4:35It was great. You know, I mean, it's I grew up with four sisters. I always wanted a brother. So when I had my, when I had Jack, I was like, this is awesome. And then when I had Lucas, I'm like, oh my gosh, this is, you know, I have friends who have brothers and not only are they brothers, they're best friends. And so for me, I got to go, wow, these are, these are going to be best friends for life and are going to have families together and hang out together. And so I was just, I was super excited about it. And like, for me, I live next door to my wife's sister like literally next door and i imagined them living next door to each other and jen and i get to visit the grandkids so just life was good i was happy what happened when did you first started noticing developmental delays maybe with lucas what happened yeah um lucas was a beautiful boy like just handsome like uh jack his baby pictures he looked like an old man but Lucas was just beautiful and handsome but he was quiet didn't make a ton of noise, didn't cry a ton but once he, I think 7 or 8 months when you're supposed to start seeing milestones of sitting up or crawling differently Lucas wasn't hitting them no no please no and Jen's very pragmatic like we should probably check this out and I'm the optimist kind of going he's just a little bit behind no big deal we can't compare to jack and um we kind of met in the middle we you know went to doctors um doctor said pediatric said everything's good then went to kind of an early interventionalist and said yeah he's certainly developmentally delayed um but still these so vague we don't know what's going on so our diagnostic odyssey started then probably eight months and went on for another year and a half until we got diagnosed with creatine transport deficiency creatine is one of the primary kind of energy sources or it's kind of the energy grid of your body and brain and when you don't have that energy your muscles don't develop also your brain doesn't develop so he was hypotonal meaning he wasn't that strong so he didn't have the strength to stay seated up so he kept falling over and it was like we were so nervous we had pads all over our home to protect them.

6:57And so that was like the first thing that we noticed. Then we also noticed he wasn't babbling, wasn't, you know, communicating the way his cousins were or his brother was. So we just said, we need to figure out what this is. Like something's up. We don't know what it is, but we'd rather err on the side of we tried everything and found out. Then let's just, you know, kind of be hands off and hope for the best. Who gave you the diagnosis eventually? What did it take to find it? Yeah, it's, we first thought he could be deaf. So we went through all the hearing tests. We thought he had some maybe sight issues.

7:37We went through that. We hooked him up to kind of every machine. And, you know, finally we got scheduled for an MRI. And we called in a ton of favors. got us in front of the right kind of neurologist who said, you know, in addition to the MRI, you should probably get an MRS. Because the MRI... What's an MRS? It's a spectroscopy. So it measures metabolic levels in the brain. So MRI is imaging. Like, what does the brain look like? MRS is the metabolic levels. So the MRI looked perfect. You know, white matter was perfect. The MRS showed that the creatine stopped right at the blood-brain barrier. And that's when we got the diagnosis.

8:16You had to pull in every favor because the system is so hard to navigate that. Yeah. And yes, I think that one of the biggest takeaways for me is we're not alone, you know, but as rare as these families, but it's up to us to navigate. Even once you have a diagnosis, like working through kind of social workers and trying to get make sure you get the the the services that are needed are hard. But yeah, for us, like we we didn't know what tests we should get. Neither did our pediatrician because it's so unknown. It's like there's no roadmap. There's no playbook. We went through the same thing with Kaylee, too.

8:55Everything you're talking about, going through the hearing tests, the vision tests, trying to figure out why there are global developmental delays. There's not a playbook for it. No. And, yeah, in essence, the system, and again, I'm not kind of coming at the system. They don't know either. It gets me to the point of thinking that diagnostics is also really important because we talk about these rare diseases, these ultra rare diseases in some cases. And I don't know about you, but I am convinced that for Cayley's disease with SYNGAP1, there are so many more people than have been diagnosed with it.

9:32It's just really hard to get to that diagnosis. Yeah. And I think a lot of people give up because I mean, it took us 20 months of diligence. It wasn't like, hey, let's try this this month. It was, that was our, that was the focus of our life is how do we find a treatment? I think a lot of people either kind of go, okay, my, my son or daughter is just different or they kind of give up and go, Hey, you know, there, nobody knows what this is. It's probably some kind of novel mutation. I think there's so many families that don't have the perseverance and I don't blame them to try to find out what it is because it's hard and it's sad I just actually remember talking to Jen she's like everything I ever dreamt about with a family kind of was the opposite of this I never dreamt of having a family with a child with a condition that we couldn't help we couldn't solve for More?

10:29Oh, then more.

10:35Jeff and his wife, Jen, shared with us photos and videos of Lucas's journey, including the hard stuff, like his baptism.

10:48Or this short clip of doctors wheeling off their son in a hospital.

10:59As a parent, you're supposed to do everything to protect your child. When you find out that not only can you not protect them, but there are problems you can't fix from such a young age, what did that do to you and to Jen? We process it differently. She was able to, I think, own her emotions, meaning she experienced grief a lot sooner than I did. I was trying to kind of be the rose-colored glasses dad. and try to, you know, hey, we're going to figure this out. No big deal. And it wasn't until I actually started doing research and I realized, wow, not only has this condition been around a while, it was discovered in the year 2000.

11:39Researchers have been working on it for 20 years and haven't cracked the code. There's no treatment. There's no therapy. So I kind of go, yeah, there's no solution, you know, because it's one thing to like, getting a diagnosis is bittersweet like it's sweet because you're going okay at least now i know it was super bitter for us because there was no treatment yeah you know and um you know so many challenging conditions whether it's cancer or heart disease like hey i'm sorry but you have x cancer here's the next steps or new chemotherapy or new radiation whatever may be with ctd there was here's what you have there's no next steps what is the diagnosis that a doctor will tell you on this?

12:24Yeah, so creatine transport deficiency, CTD, and there's a lot of creatine studies right now with regard to supplementation. Like any athlete is taking creatine. Right. But now like people are taking it for brain health too. So supplementing creatine helps with your body and your brain. Lucas's body makes it naturally. So he has it running through his blood right now. There's a transporter that takes it from the blood to the muscles and the blood to the brain. His transporter is defective. So he has everything he needs, but the kind of the bridge that takes it from the blood to the brain is broken, and there's no way to bypass currently the blood-brain barrier.

13:02So his brain doesn't get the energy it needs to develop. So you think about SYNGAP1, like he doesn't have the energy to create these synapses. Body. What color is that ball? Ball. Is it brown? Black. Or black? Black. Black.

13:24So, I mean, if you look at Lucas, he looks like your everyday kiddo. Where he struggles mostly is with communication, behavioral.

13:44Kind of fine motor skills. like we've had to work really hard on gross motor but he can jump skip run he's happy i mean he is you know i i look at him and i played college football like lucas would have been an athlete you know if he was neurotypical just like his brother he would be one of the best on his team so he just he has it in him he loves playing um but yeah it's it's communication behavioral he just his brain doesn't have the energy it needs to function this is how i'm gonna take this force yeah that's good even before beast games even before kind of everything changed like our mind and jen's goal was to make sure that jack didn't have to care for lucas he would choose to care for him so meaning like it was our job to kind of go let's try to save as much money as we can let's invest wisely so that lucas can be cared for as he ages and Jack gets to continue to be his brother first and then caregiver second.

14:45We just didn't want to have to put that burden on Jack as his brother. But, you know, as a parent, it's your first concern. What happens to my child after me? And Jack's, you know, being a sibling of a rare disease kid is hard. But Jack has asked me, like, mom and dad, like, what happens when you guys aren't here? Like, what happens when you guys die and i think he asked us at the age of eight which is just like wild yeah and you know jen is amazing and doesn't mince words like we told him you know like this is what it would look like here's our goal um you know and i think we're blessed with a great big family but at the end of the day if he needs 24 7 care i don't want it to fall on jack i want jack to be his brother first And I will say siblings of kids with a rare disease or with any special issues, any health issues, I think grow up to be such empathetic people.

15:46They just see a side of life that not everybody does at a young age. They grow up fast. They get a lot of perspective early on of what matters. And I think they just have to go through challenges. Like Jack, you know, Jack's head is always on a swivel. Because if Lucas isn't getting attention from mom or dad and wants it, he goes for Jack. And whether it's take what Jack and his iPad or pull Jack.

16:20And so Jack is just attentive and he's now learning how to redirect. And, you know, redirecting... That's hard. It's hard. Yeah. You know, and before I was in kind of the home care space. So caring for older adults. And you learn how to redirect with patients who have Alzheimer's. Okay, so tell me about this. Your life kind of led into some of these paths. And this was before Lequist was born? It's bizarre. What happened? So I was always in health care. So I just, I started in medical devices and then I started working for medical device startups. And once I moved to Silicon Valley, I got into kind of more health tech.

16:55And there's a company that I joined named Honor that provides, it's a tech company that is trying to kind of modernize non-medical home care. And that just is caregivers. When you think of caregivers for seniors. and so I led some teams there and so I learned all about activities of daily living so how to help with toileting how to help with lifting and transferring all these things that Lucas would eventually need before Lucas was even bored that's crazy yeah I literally started the job the month Lucas was born you ever feel like Lucas was given to you for a reason of course yeah i mean i i there there's no other explanation um and i also think that um it works both ways like lucas i think lucas's soul was perfect and i think lucas his soul chose this body chose us as parents um you know and i think for us to be the parents of lucas is an absolute honor you know and i think so i think jet and i like have to do something with it i feel the same way about Kaylee.

18:07Yeah. You said before that you and Jen processed all of this a little differently. How did she process it? How did you process it?

18:21I tend to not think through all the details. So I'm like, okay, we're going to figure it out. I don't know how we're going to figure it out, but it's more of kind of a North Star, we're going to be good. and Jen immediately and consistently will think about all the stuff that needs to happen. I love you. Okay, say bye-bye. It feels like the male-female breakdown is pretty consistently that way. Like, thank God for you, North Stars, but sometimes I want to punch you in the face. Of course, though, and trust me, Jen wants to do the same thing. But yeah, but if it wasn't for, and I have had to lean into her and she's had to lean into me so she's become make each other better it's yeah and she's become more optimistic and more kind of okay not sure how we're gonna figure it out but we're going to and i become okay i think we need to call this social worker i think we need to talk to this specialist and i also know he's young but like uh i i do get nervous about what happens when he gets bigger 12 and 15 and 18 um he's already a big boy it's like what what does it look like am i gonna have to we're gonna have to prescribe medication to to modify his behaviors like is he still going to be the same lucas are we taking a part of away from who he is so it's a this is probably why i don't think about it too much as if i have why i leave it to jen because i don't like i don't like to i just i don't i don't like looking at a life for him that we can't help.

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21:30And then when you're ready, you will take that blindfold off and try to guess it. So let's talk about the beast games. What you thought of with this, how it came across your desk. So going back to the theme of things kind of fall into my lap, in April of 24, I got laid off. Yeah. So I was working for a healthcare startup. I was leading kind of their sales and business development team. Funding fell through. And they kind of looked at me and kind of go, hey, sorry. And it was one of the most amicable breakups. I remember talking to the CEO and talking to my boss and going, hey, I love what you're doing.

22:13Thank you for the opportunity. It was also in the kind of the senior space. And, you know, I'm at home kind of going, okay, I get to be dad at home for a couple months. I'll figure it out. And I saw like on the website, like Beast Games season, Beast Games application, Mr. Beast. And I go, okay, Jack loves Mr. Beast. We've started to watch it. Like, let me check this out. And so it said, largest competition game show in history, largest cash prize in history and i'm like okay i don't have a job right now like i think i can apply so i just i set an alarm on my phone and right on the whiteboard like i think it was may 31st last day to apply guess what may 31st comes i haven't applied yet why uh a little bit of a procrastinator on some things and it was probably part of my thing is like i i was psyching myself out like i need to get a job like who do i think i could actually go on a game show and win on the largest competition show like i've never done a game show and if you know mr beast it's like huge special effects like the biggest sets ever my video was just on a webcam and lucas was with me and um i just kind of told my story of what i would do if i want a million dollars why i want to do it and i press send and i'm like hope for the best and i'm like in my mind i'm like there's no way I'm going to get cast.

23:39Like this is, I'm no fun. And then a week later, I get a call from them. They're like, hey, we saw your video. We like it. We want to ask you some more questions. Fast forward a few weeks. They go, guess what? You're in Beast Games. And it starts in like three weeks. Have you told Jen any of this at this point? I might have led some breadcrumbs. But like the reason I didn't tell Jen was because Jen is the problem solver. So if I tell her I'm going to be on this, she's going to go, okay. then if you're not here who's gonna drop off the kids who are gonna do this and i'm like i don't want to do that to her until i know um and so once i found out and i told her she was excited she was she was super excited and it was one of these things where um i knew i always had her support um and her and i are different in this way where i'm more spontaneous more kind of risk-taking and so she's kind of looks at me kind of like i can't tell you no like you have to do this but but one of my favorite parts is i leave and i kind of go this is awesome like i get to go and my goal is to tell lucas's story and she looked at me she goes screw that she goes if you're gonna leave you better win this thing i'm in my hotel room going has the game started i'm memorizing serial numbers on the bottom of the lamps like i'm trying to like wait why are you memorizing cereal because i didn't i didn't know if the games had already started like like like if you like if they got us together go hey first challenge is you have to recreate your room or like i didn't know like i were getting ready for any and all possibilities yes i was i was so in my head about like in because you don't know what the game i don't know but i also understand like i'm probably the oldest person there you know so i was definitely one of the top in the kind of the highest 10 of ages most people are in their 20s and 30s oh my gosh yeah so it was like And I'm like, I can't hide my age either with my hair.

25:29So I was like, I needed to have like an edge. So my - You're not that old. I know, but in Beast world, like Mr. Beast is 27 years old. People who grew up in Mr. Beast are in their 20s and 30s. Yeah, I'm like Johnny Knoxville. Yeah, no, and I'm with you too. So I was just trying to get my mind around what I'm going to do. And then I realized like once I got in, I'm like, I need to make friends. Like this is a social game where like, there's no way you're going to get far on your own. That's very Squid Games of you. Yeah. And so like I just, I like to ask questions. I like to be interested in others.

26:03So I just started meeting people. I met an amazing group of folks on the first day who kind of I stayed with. And like one of my really good friends was with me all the way to the top 10. What I quickly realized is if I can just be better than 50 % of the people on every challenge, you get to move on. So it doesn't like you have to be the best. So it's just you have to be better than 50%. 100%. And so the challenges go on. And it's once we got down to like episode six, there was 60 people left. Wow. From 2000 down to 60. 60. And then I kind of go, okay, I just got more focused. They kind of go, hey, why am I here?

26:38What am I trying to do? And then I get into the top 20 and I go, I've been able to tell the camera about Lucas. I've been able to, people have interviewed, Jimmy's interviewed me and asked me about what CTD is. I'm like, this is awesome. Like I can, I am telling Lucas this story to a global stage. and then I realized oh I can I can win this thing for your sake do not let him pick this briefcase he will take that blindfold off and try to guess it

27:06but when I get to the final six like it's real and I look around and I know all these people I've been I've spent like 40 days with them without a phone without without internet like I You don't even know what date it is, what time it is. What's the hardest part of all of that?

27:28It's hard to be away from your family and not be able to talk to them. Like, this is the longest I'd never talked to Jen in my life.