‘It’s a Wonderful Life’ with Bedford: Child born with rare genetic disorder goes viral

CHICAGO - When Jesse and Hollie Erickson of Chicago, Illinois, found out they were having another baby, they were thrilled and prepared, considering this wasn’t their first rodeo. But what they were not prepared for was having a child who would be diagnosed with a rare genetic disorder.

While this certainly broke their hearts for their child, they decided their son Bedford’s unending determination deserved a spotlight and decided to educate people on his condition.

"When we were choosing Bedford’s name, I felt like every name I threw out, Jesse was like, ‘No, no, no.’ I threw up Bedford from ‘It’s a Wonderful Life’ because that’s my favorite movie. The idea that one man’s life can touch so many. So now that we have seen this come to fruition, it’s like, it’s crazy that his name on top of that, it has so much meaning behind it," Hollie told FOX Television Stations. 

Bedford goes viral

The backstory:

Hollie, Bedford’s mom, started sharing information about Bedford’s life with Schwartz-Jampel syndrome mainly to keep friends and family updated through social media, but neither herself nor her husband expected the type of response they received after posting a video of Bedford navigating getting over a curb.

"I'm a big motivator – let me encourage you, let me coach you. I kind of have done that with the things that I write and share (about Bedford), hoping that his story or our story will encourage someone else out there who needs to hear something good. And the world is eating it up," Hollie told FTS.

In July, Hollie posted a video of Bedford attempting to get over a curb while using his walker.

The video received tens of thousands of comments of encouragement, gratitude and kudos to mom for not allowing her son to give up.

What they're saying:

"We get messages every single day from people who are facing their own struggles, who are almost reaching out to us for advice, help, motivation, or just telling us how much Bedford impacted them just from a video or two. And for us, that's like we talked about a little bit earlier, Bedford doesn’t understand what's going on fully yet. He's two and a half. But the impact he's having on people already is just so powerful and incredible. And I cry almost every day and it's just amazing," Jesse said. 

Local perspective:

Though rare, Bedford’s parents actually managed to connect with a teen who lives in Indiana that has the same condition as their son.

"We can’t really find anyone directly that we’ve talked to at any amount of length that has this as well," Jesse said. So finding another person who has the same rare disorder as Bedford was a miracle.

"In driving distance right in our backyard, right? And we were like, ‘You’re kidding me. We have to meet him. So we did,’" he added. 

The family ended up meeting with Gio, a 17-year-old sports enthusiast who hosts his own podcast covering a variety of sports topics.

"He’s the absolute best," Hollie said. 

What's next:

Bedford’s parents have set up a website selling T-shirts that read "Meet you at the curb," to help raise money to build an all-inclusive playground, not just for their son, but for other disabled children.

As expected, building an entire playground that is all-inclusive isn’t the cheapest venture, but through the power of social media, Hollie was connected with a follower whose mother owned a nonprofit that builds playgrounds catered for disabled children.

Hollie reached out to Unlimited Play and was told her request for assistance would be taken into consideration. However, not long after she contacted the non-profit, she and her husband had some exciting news to share with FTS.

"So then a week later I was on my way to a haircut to get some highlights and she said, ‘Hey I have some exciting news, can you hop on a Zoom call’ and I'm immediately like can you (Jesse) hop up on the video, I'll hop on the audio. So I walked outside with tin foil in my hair and the cape on and hopped on this call. And they said that they have some exciting news and that they host an annual gala every fall and they want to feature Bedford at their gala. So I immediately start crying and I'm like, ‘What is life right now?’ Again, with tin foil in my hair. And I'm just like, Jesse, could you say anything? And it pans to him on the call and he's crying," Hollie said.

Bedford will be one of the guests of honor at the gala in October and his parents are coordinating with their local community to prepare for building the new playground.

What’s more, Little Tikes, the toy brand, will match whatever funds are raised at the gala.

"So we are going to St. Louis in October to share Bedford’s story there. And we are in the process of raising money for an inclusive playground because we put it out there and the Lord was like, yep, we're going to do this," Hollie added.

What you can do:

Anyone who wants to make a donation to help fund Bedford’s Inclusive Playground, can do so here. 

Bedford's family are also selling shirts that say "Meet you at the curb" to help raise funds. Click here for more information.

What is Schwartz-Jampel Syndrome? 

Dig deeper:

Schwartz-Jampel Syndrome is a rare genetic disorder and only 150 cases are reported across the world, according to Jesse.

"There have only been 150 confirmed medical cases since the 1960s globally. They do think there are more cases than that, like maybe 1,000 to 2,000, but they have like 150 that are documented," he explained. 

The disorder is characterized by abnormalities of the skeletal muscles, according to the Rare Disease website. 

This includes: 

• Muscle weakness and stiffness
• Abnormal bone development
• Permanent bending or extension of certain joints in a fixed position
• Growth delays resulting in abnormally short stature 

The disorder can also have levels of severity depending on the person.

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