By Sarah Tyre
Meet Bryce. His parents are Kyle and Jenna Heckendorf, and his uncle is Kole. Like any 7-month-old, Bryce falls asleep in his parents’ arms and loves to be read his favorite book, “Commotion in the Ocean.” His favorite page is filled with sharks. Unlike most newborns, Bryce has been diagnosed with Krabbe disease.
Krabbe disease (also known as globoid cell leukodystrophy) affects the nervous system. The symptoms of Krabbe disease usually appear in infants under the age of one. Symptoms typically include irritability, muscle weakness, feeding difficulties, episodes of fever without any sign of infection, stiff posture and slowed mental and physical development. As the disease progresses, muscles continue to weaken, affecting the infant’s ability to move, chew, swallow and breathe. Affected infants also experience vision loss and seizures.
There is no denying Bryce’s strength. He is used to being poked and prodded. Bryce has endured more challenges than most of us will face in our entire lives.
“I think that’s one thing that I’ve admired most about Kyle, Jenna and Bryce,” Keith Heckendorf (Kyle and Kole’s brother) said. “Just fighting through not only everyday things, but the fight for Bryce’s future. And I think that no matter what those boys have accomplished on the athletic field, I think they all tip their hats to the fight that Bryce is experiencing every day.”
Due to the rarity of Krabbe disease, Kyle and Jenna recently made a trip to a specialist in Pittsburgh Pa., to visit Dr. Maria Escolar. She is the only Krabbe specialist in the nation. The ability to visit with a specialist came as a huge relief for the Heckendorfs, even if it meant flying across the country with their 7-month old. The visit will allow them to get a feel for where Bryce is at and regulate the medications he needs. “There’s not a lot of information out there about it,” Keith said. “The doctor at the children’s hospital said, ‘To be honest with you, this is a once in a lifetime diagnosis for me. I’ll probably never have a case like this again the rest of my career.’”
“For them, reaching out to the doctor in Pittsburgh was big, just so they could, because she has a database of people who have had Krabbe disease and she’s been able to take that information, and I know they were able to compare where Bryce is at and compare that to other people that got diagnosed in a similar time frame and are showing similar symptoms,” said Keith. “But most places don’t have access to that information and to those resources.” Kyle and Jenna have received an abundance of support from their friends, family and community members. Family members created an online journal for Bryce so anyone can see how he is doing. It is also an outlet for the “B.Strong Foundation.” Bryce’s aunt and uncle, Keith and Mia Heckendorf, created the “B.Strong bands” as a reminder of his continued strength and perseverance.
“THERE ARE SO MANY PEOPLE THAT ARE WISHING, HOPING AND PRAYING FOR HIM AND WONDERING ‘HOW DID THAT TEST GO?’”
“Obviously for us personally, it takes on the message of Bryce,” explained Keith. “The strength that he needs to continue to fight the battle he’s fighting, and the strength he gives all of us, as we see him fight this battle, but B.Strong can also mean a lot of different things to a lot of different people depending on the situation. Just to be strong in the face of adversity no matter what kind of adversity they’re facing. As they wear the band it can be a constant reminder for them.”
“We wanted to create a support system, share Bryce’s story and spread awareness,” Kristen Heckendorf, Kole’s wife, said. “There are so many people that are wishing, hoping and praying for him and wondering ‘How did that test go? What was found out? How did Christmas go? Are you sleeping?’ Instead of the overwhelming amount of phone calls, (we) follow his journal and any type of events for him and how a donation could be made.”
For Kristen and Kole, the support system is their way of helping Bryce. The Heckendorf family bond is strong, and they didn’t think twice about kick-starting a foundation.
“For us, the whole thought behind the process is that we want them to be able to do everything that is possible for Bryce, to give him the best life possible,” Keith said. “We did not want it to be a financial decision for Kyle and Jenna as parents.”
Kyle and Jenna have felt much support from so many different people, even total strangers. It is similar to the support Bison athletes feel from Bison Nation.
“The platform that we have through athletics and the following they have of fans, it’s amazing how many people that’ll touch in a short period of time,” Keith said. “It’s funny because obviously Kole and Kristen have lived that, they’ve lived being Bison and being in the spotlight of Fargo, they’ve felt that support. It’s amazing the fan support that is out there.
Bryce doesn’t know hardly any of the people that have reached out to support him on a personal level, but it’s amazing how many people know the family, or how many people have heard the story. How it’s touched their lives in some way. Whether it’s been to call or write, it’s been overwhelming to see the support that they’ve been able to receive.”
The B.Strong fund is a way to raise funds for Kyle and Jenna, as well as to show support.
To become a part of this great bond created by the Heckendorfs, donate or offer support by logging onto the website above.