"We raised over half a million dollars for an inclusive playground in less than a year."

What happens when a single viral video transforms a devastating rare medical diagnosis into a half-million-dollar community miracle?

In this feature-length episode of This One Time in Kankakee, host Jake LaMore sits down with local residents Hollie and Jesse Erickson for an incredibly raw, moving, and ultimately triumphant conversation about their youngest son, Bedford.

When Bedford was just a toddler, he was diagnosed with Schwartz-Jampel Syndrome (SJS), an ultra-rare genetic condition with only about 150 documented cases in medical history. Jesse and Hollie open up about the physical and emotional realities of SJS—a condition that causes a painful, perpetual "Charley horse" across Bedford's entire body, complicating everyday routines like buckling a car seat or brushing his teeth . 

But instead of retreating into the isolation of a rare diagnosis, the Ericksons chose to share their journey online. A simple TikTok video of Bedford trying to navigate a local park exploded into a global phenomenon, gaining over 5 million views . What followed can only be described as a real-life It’s a Wonderful Life moment. In less than a year, a massive wave of local and global generosity poured in, raising over $500,000 to construct a state-of-the-art, fully inclusive playground at Grace Christian Academy in Kankakee. 

Key Topics Covered in This Episode:

• The SJS Diagnosis: An engineer’s perspective on tracking down a medical mystery and facing a "progressive and permanent" reality. 
• The Reality of Special Needs Parenting: The exhausting physical demands of SJS and the emotional toll it takes on a family. 
• Going Viral for Good: How a town in the UK accidentally helped launch Bedford’s video to 5 million views. 
• The Kankakee Rally: A look at the local businesses, high school friends, and elementary students who stepped up to fund the playground . 
• Siblings of Special Needs Kids: The intentional ways Hollie and Jesse support their oldest son, Linkoln, ensuring he thrives alongside his brother . 
• A Global Connection: How a family from Illinois is now bridging the gap for isolated SJS families in Slovakia, Lebanon, and Brazil . 

About the Show:

This One Time in Kankakee is a narrative storytelling podcast highlighting the unique people, places, and history of Kankakee County, Illinois. Hosted by Jake LaMore and proudly produced by the WVLI Podcast Network.

Subscribe & Listen: Don't miss this unforgettable testament to the power of community, empathy, and a little boy who refuses to live small. Hit subscribe on Apple Podcasts, Spotify, or wherever you get your podcasts! 

Want more from the WVLI Podcast Network? Listen to the WVLI News Update with Rob West every weekday morning! Get the days local news from the greater Kankakee County, IL area in 10 minutes or less. 

Subscribe now on your preferred podcast platform: https://wvlinewsupdate.buzzsprout.com

The Voices You Trust, Beyond The Dial.

Transcript

SPEAKER_02 0:01

An episode of this one time in Kankakee from the W VLI Podcast Network will start right after this. Support for this one time in Kankakee comes from the Kankakee Area YMCA. The Kankiki Area YMCA is more than just a gym. It's a movement of thousands of people making positive changes in their lives and their community. The YMCA is Kankiki's premier provider of family health and wellness. Become a Y member today at their location on Kennedy Drive in Kankiki or at K3YMCA.org. For youth development, for healthy living, for social responsibility, the Kankiki Area YMCA. Support for this one time in Kankiki comes from Ravenspring Media, where method, media, and mindfulness create impact. From video production, photography, animation, and team building, Ravenspring Media creates compelling content that captures your brand's unique story in a strategic way. With over twenty years of visual storytelling experience, Ravenspring Media brings together creative expertise and a fresh perspective to every project they undertake. Begin your story today at RavenspringMedia.com.

SPEAKER_00 1:42

This one time in Kankiki, we raised over half a million dollars for an inclusive playground in less than a year.

SPEAKER_02 1:53

Welcome to this one time in Kankakee from the WVLI Podcast Network. I'm Jake Lamore. Most of the stories we tell on this show are about local history or neighborhood quirks. But today, we're talking about a story that started right here in Bourbon A and ended up touching the lives of many around the world. They're Kankakee County lifers. Holly grew up in Moments. Jesse and Bourbon A. They actually crossed paths back in high school without even realizing it. When they finally did connect and marry, they envisioned a standard life here in the community. But their path to parenthood was anything but standard.

SPEAKER_00 2:52

We actually struggled to get pregnant right off the bat. And I I struggled heavily thinking maybe motherhood isn't in the cards for me, and I probably shouldn't have been so cynical. But it was one of those things where then, to be raw, everywhere I turned, someone was pregnant. And we, with a little help from the doctors with different medicine, we were able to get pregnant with our first after about a year and a half. Jesse actually has taught him the elements of the periodic table, and he has memorized over 70. 70 at the age of four. He can rattle them off. Hopefully he remembers them by the time he gets to chemistry class. I've always liked the name Lincoln. I think I gravitated toward that just in respect with Abraham Lincoln and then hearing it in random TV shows and conversations. So when I pitched it to Jesse, who is a longtime Zelda fan, he obviously ate that up. So I kind of got to choose the name, but then he wanted the spelling.

SPEAKER_01 4:05

It's L-I-N-K-O-L-N. Link for short.

SPEAKER_02 4:09

But even with a gifted firstborn, the Ericssons were soon thrown into a ride they didn't see coming. Nine months after Lincoln was born, they found out they were pregnant again. This time, Holly wanted a name with a different kind of legacy.

SPEAKER_00 4:26

And I was like, oh man, he's gonna be a Christmas baby. Like, it's a wonderful life to be perfect. And then randomly one day I was like, Butford's actually a really cool name. And everyone gets to choose their own name, and then everyone gets to have opinions about what you name your kid. But not once have I ever second-guessed it since that thought came to my head. I'm like, yes, this is so fitting. So I feel like we were leading up to the week before he was born, and Jesse finally was like, Yes, yes, that's good. I feel like because he was a December baby, it just worked out perfectly, and now he's my little It's a Wonderful Life baby.

SPEAKER_02 5:07

For the first few months, Bedford seemed like a perfectly healthy baby. But parents have a sixth sense for the small things. For Holly, it was Bedford's eyebrows.

SPEAKER_00 5:20

We started noticing that his eyebrows always seemed up. And we were like, oh, that's interesting, like that's just gonna be his trait.

SPEAKER_01 5:28

But then we started noticing that it was happening when he was asleep.

SPEAKER_00 5:31

Yes, he would be sleeping with his eyes closed, but his eyebrows would be raised.

SPEAKER_02 5:35

Along with the eyebrows came a penguin wattle. At the 15-month appointment, their pediatrician noticed it too. They were sent north to an orthopedic office in New Lennox. That visit turned into one of the worst experiences of Holly's life.

SPEAKER_01 5:53

After the x-ray, when the doctor walked back into the room, I just knew something was very wrong. I mean, you could just see it on her face. You could see that she was like bracing herself for a hard conversation.

SPEAKER_02 6:06

The doctor admitted she had no clue what it was. She referred them to genetics. They had to wait three agonizing months for results from a$20,000 test sent overseas.

SPEAKER_00 6:19

I took the phone call and I don't even think I could say the name of it when I got home, but as soon as she told me that she's she was very calm, rattling off all this information, but she said he likely is in pain constantly. I think I checked out mentally.

SPEAKER_01 6:37

So Holly was sort of off to the side, listening on speaker, but wanted me to have that conversation with the genetics counselor. And she told me a couple things, but was really leaning on, you know, when we had this appointment, and she's like, You're probably gonna Google this. I'm like, I'm already Googling it uh while you're talking. And um then I started regurgitating, you know, some of that back to her, which there's not much you can find. There's very few. You do a Google search, you usually get like a million options, and this had like, you know, 10.

SPEAKER_02 7:14

The name they finally learned was Schwartz Chample Syndrome, or SJS. It is a condition so rare that only 150 cases have been recorded since the 1960s. The medical reality was brutal.

SPEAKER_00 7:30

Simply put, they said that they're theorizing he feels like he is a constant Charlie horse, but everywhere through his body, and which is why the eyebrows are raised, why his certain muscles on his body look very chiseled, like he has a six-pack. His traps look like he is a full-time athlete. Those are the two main places that you notice it, but because his muscles are so tight, it impacts the bone's ability to grow, which then impacts his stature, it impacts the way that his the direction that the bones are growing, so much so that it even impacts his mouth, the way that his muscles are contracting in his mouth, it limits the way that his teeth are coming in.

SPEAKER_02 8:15

This isn't just a physical limitation, it's a daily exhausting battle for basic tasks.

SPEAKER_00 8:22

As soon as I pull the toothbrush out and the little floss are out, he yells and tries to plead. Which is heavy. It it breaks my heart to have to do that. Obviously, no one like in loves flossing, or most people don't love flossing. But after you do it, it doesn't hurt as often, but it hurts him every day.

SPEAKER_02 8:40

Even a simple car ride is a challenge.

SPEAKER_01 8:44

When we started putting him in a car seat, you can't put him in a car seat because he can't sit right, and so you can't buckle the car seat. So we had to get a bigger car seat than his age is supposed to have, which comes with its own issues of driving and danger, but we did not have a choice, and you still can't buckle that thing. So, like it's just all these little things that we deal with all day, every day that people just you would you just won't think about. And one of the other things is that when we hold him, it feels like holding a plank. You know, most little kids will sort of like wrap around you as you hold them, and that actually helps you in carrying their weight. But now Bedford is uh three in change, he's heavier than we should be carrying him all the time, but we still have to carry him all the time.

SPEAKER_02 9:32

The diagnosis was a bomb on their lives. Jesse and Holly found themselves flipping roles. When one was strong, the other was tanking. But the hardest part was the community's gaze.

SPEAKER_00 9:46

I would be at Jewel or Burkhot's, and someone would see me and stop me in the produce section, and I would start talking about it and then just start crying. And I'm like, I cannot be crying above the tomatoes every week. So I was like, I'll start posting, I'll give people very practical, tangible items so that way when they see me, they can still have that relationship with me, but they have something to work with.

SPEAKER_02 10:09

Holly started posting on TikTok to avoid the grocery store breakdowns, but then she posted a specific video that hit a nerve with the world.

SPEAKER_00 10:19

We were just at Perry Farm, and I was sending a video to his PT, because we had just gotten immersed in PT and OT, and he was just crawling down. I was showing her, like, we don't have stairs in our house. Another god thing that we moved to a place that was a ranch. And just feeling the heavy of these kids, you can even Lincoln in the background running around, and in Bedford having to literally crawl down, me offering my hand and him saying no. So that was he was a year and a half, and he already was telling me no, I'm gonna do it. And I posted that, and I the caption on it was if I had all the money in the world, I'd make every park Bedford friendly. It went viral because there's a town in the UK named Bedford, and everyone was so confused about that.

SPEAKER_02 11:02

That video didn't just get views, it got results. It led them to a nonprofit and a match from Little Tyques.

SPEAKER_00 11:12

So, yeah, we went to the gal in October and walked away with the match at about$275,000, which is crazy.

SPEAKER_02 11:22

While the national attention was huge, the local support was personal. Kankiki County businesses and neighbors began finding creative ways to fill the gap.

SPEAKER_00 11:42

I had a a friend that I played against in high school from Dixon, Illinois, do a cookie sale and Ben Mona's money. So it's just there's so much. River Valley's Awana Kids did um a fundraiser, and then Grace's Elementary Kids brought in money. Like Sunday morning, we had a$50,000 donation come in.

SPEAKER_02 12:10

The goal of a$500,000 playground wasn't a dream, it was fully funded. But the Ericksons weren't just building a park, they were building a network.

SPEAKER_00 12:21

Because of our social media presence over the last year, we have actually connected with about 10 10 to 12 people of all ages. I would say maybe 80% are younger kids. Um, and that might be because their parents are millennials and they're on the internet, and if they're older, they might not be. But I would say 60% of those people are foreign uh to where we have to use Google Translate. There are some in the United States.

SPEAKER_01 12:49

You know, one's from Slovakia, one's from Lebanon, one's from two from Chile, other sisters. And it's interesting to talk to them through broken English and translation translator tools to see the the vast differences in their health care and their what information they have. I mean the one from Lebanon especially was asking us all kinds of questions. Didn't I mean down to the shoes that he was wearing. Um I just I've been talking to the one in Brazil more recently and to realize like this mom has like nothing. I mean, she they're just like trying to get through the day. So to even see like the amount of care and um information we have had, though it has seemed so little um compared to some of these families, I mean, is is is wild. I mean, this is this is one or two of them have said to me, like, yeah, we haven't talked to anybody else. You're the first ones.

SPEAKER_02 13:45

Through all of this, there's another little boy in the house, Lincoln. And Jesse and Holly are incredibly intentional about making sure he isn't lost in the shadow of Bedford's diagnosis.

SPEAKER_01 13:58

For Link, too, like his his whole life is going to be somewhat built around this this thing. He's gonna be in school with his brother, he's gonna have friends and people around that he's gonna have to help him. I mean, he already has to help his brother in a lot of different ways and and does willingly and kindly. But those things have a impact, especially as he get as they get older and it's more they understand more and what's going on, and you know, Link wants to run off with his friends but has Bedford in tow, right? I mean it's just these are these things that are gonna happen. And so I think part of our commitment in this parenthood journey is to really focus on these two and figure out how to make sure neither of them are left behind.

SPEAKER_00 14:41

We are super intentional with at home to make sure that he gets one-on-one time with both of us, um, that we celebrate what he does. Um but I don't know, that's just something that's heavy on my heart, too.

SPEAKER_01 14:54

It's hard to grow up and realize your little girl's famous. Yeah. I'm joking, sorry.

SPEAKER_02 15:02

They see Lincoln becoming an advocate, watching him play tag at daycare, and seeing other kids adapt to his brother.

SPEAKER_00 15:09

Picking Bedford up from daycare and seeing him play tag with a kid who can run, but that kid is purposely running at a slower pace so Bedford can catch him. Like, that's such a heavy thing to watch as a mom, especially a mom who was an athlete, to know that he has not experienced the ability to run, but then to watch a four-year-old understand how to be empathetic and care about Bedford to such a degree that he knows for Bedford to participate, he has to adapt a little bit.

SPEAKER_02 15:51

The playground at Grace Christian Academy is scheduled to open this summer. It's going to be a community celebration for a boy whose name literally means it's a wonderful life.

SPEAKER_00 16:03

My hope and my prayer is that when he does realize that he is different, like he wakes up with such desire to share that uh and not see that as true limitation or let that send him to a dark place. Like, I have been gifted this life, and I have this opportunity to encourage other people to take it, take advantage of that, live their life with purpose, life is short. I do think that he's going to be a motivational speaker someday with eyebrows raised and all.

SPEAKER_01 16:35

I would just say, you know, I think all of us have to go through some things like that from time to time. But there's always light at the end of the tunnel. Focus on those things that are good and uh try to see the light and the joy and even the hard things. Because I mean, Bedford's situation, though at first very dark and hard, turn into something just beyond our wildest dreams. And I think for us, only you know, only God can do that. It's changed our life forever.

SPEAKER_02 17:10

This has been this one time in Kankake from the WVL Podcast Network. I'm Jake Lamore. Our thanks to Holly and Jesse Erickson. If you have a story to share, send me an email at Jake at Milner MediaPartners.com and finish the sentence for me. This one time in Kankakee.