Dad of 5 Receives Shocking Diagnosis at 43 After Noticing Symptom While Training for Half Marathon (Exclusive)

• Brian Jeansonne was diagnosed with ALS in 2020

• Since his diagnosis, he and his wife, Kristy, have been making content on TikTok, sharing their experiences navigating life with the disease

• Kristy and Brian use their platform to connect with others who have ALS, with Brian taking some Zoom calls with those who have recently received their diagnoses

In the fall of 2019, Brian Jeansonne was training for a half marathon when he noticed his foot was dragging. Eight months later, he learned this was a sign of ALS, or Lou Gehrig’s disease. The lives of Brian, 48, his wife Kristy and their five kids were instantly changed forever.

Not long after, Brian found himself turning to TikTok. “I began recording videos on our porch, a sacred space where I could reflect and process everything I was feeling,” Brian tells PEOPLE. At first, it was just for him and his family and a way to document their journey. “Over time, Kristy and I realized these videos could connect with others who might be going through their own struggles.”

ALS — which stands for Amyotrophic Lateral Sclerosis — causes motor neurons to break down and die. Over time, someone with ALS loses the ability to walk, chew, swallow food and breathe, according to WebMD.

In 2022, Brian had a tracheostomy, a common procedure for many ALS patients that can extend their life. He now requires round-the-clock care. Kristy, 41, says it was some of his caregivers, who were in their early 20s, who helped give the family the final push to share their story on TikTok.

“At the beginning, it was just fun and random,” she says of the family’s videos. “And then we started getting attention, and I was like, ‘Oh, wow, this is good stuff for people to see.’ ”

In June of 2024, they shared their most-watched video, recounting Brian and their family’s journey, which has been seen more than 2 million times. Other videos show Brian’s day-to-day life, how the family renovated their house and his decision-making process around his tracheostomy. 

The most surprising part, for Brian, is the “deep sense of community” the family has felt thanks to the account. Their inbox is always full of strangers sharing their own experiences with ALS or asking for help navigating a new diagnosis. “It’s been eye-opening to see how many people are affected by ALS and are searching for information or connection,” Brian says.

“I love helping others through all of it and just giving them a sense of hope,” Kristy says. She and Brian live with their five kids — Micah, 20, Jonah, 19, Nathan, 17, Lucas, 16, and Zoe Moon, 13 — in New Orleans, which Kristy notes has a pretty large ALS community, but many people who reach out to them feel isolated.

“Brian will have Zoom calls with people that we’ve met through TikTok, just helping them through their diagnosis. There are literally people [who’ve been told by doctors], ‘Sorry, you’ve got two to five years’ and they’re given like no information.” There are so many things she and Brian have had to figure out about navigating his disease, and Kristy is glad TikTok helps her pass the information on to other people.

As for the account’s appeal to those who don’t have firsthand experience of ALS, Brian says, “We’re just an average family trying to journey through life together, and I think people found that refreshing. We’re not trying to be perfect. We’re just showing up as we are, navigating life’s challenges with love and honesty.” 

The only negative, he says, is how much time managing the account takes. “The ALS community currently needs this type of social media connection, but it’s become a full-time job. Kristy fundraises full-time for our family, takes care of me and raises our five kids all while trying to keep up with messages and content. We want to respond to everyone, but there just aren’t enough hours in the day.”

Brian doesn’t want viewers to think that his family is “endlessly strong” or “perfect," either.

“The truth is we struggle,” he explains. “We have hard days and moments when we feel like giving up. But what keeps us going is the love and grace we extend to one another. It’s messy, but it’s also real and we choose to keep showing up for each other.”

Read the original article on People