Heckendorf stays strong for dying nephew

July, 10, 2014
Jul 10
2:00
PM ET
Keith Heckendorf lives the college football grind, where days are eaten up in meeting rooms or on the practice field, in long car rides or on the phone. It is easy to become completely consumed, to lose track of time and perspective.

Whenever that happens, all he does is look at the light blue band on his wrist.

B. Strong.

B. Strong. For Bryce.

[+] EnlargeBryce Heckendorf
Courtesy of Heckendorf familyBryce Heckendorf is fighting a rare genetic disease that affects the nervous system. His uncle, Keith, is an assistant with the Tar Heels.
While Heckendorf works in Chapel Hill as a North Carolina assistant, his nephew lives nearly 1,000 miles away in Wisconsin fighting Krabbe disease, a rare genetic disorder that impacts the nervous system. Bryce Heckendorf, 14 months old, is slowly dying. He can no longer swallow. Or smile. Or roll over. Or move his arms and legs. Nobody will ever know the sound of his voice.

He spends most days sleeping, snuggled up with his mommy or daddy. Those snuggles are all that make him happy.

Doctors do not expect him to live past 2.

"How do you wrap your head around why is this happening to this little boy?" Keith Heckendorf said in a recent phone interview. "You look at him and he's the cutest, most precious little boy and if you didn't know any better, you wouldn't know anything was wrong with him. But he's at the point now where he should be talking, he should be crawling around and he can't do any of that stuff. It's just so hard."

The diagnosis was incomprehensible to the Heckendorf family. Bryce was born completely healthy, a beautiful boy with blonde hair and clear blue eyes. He hit all his milestones like any growing, healthy baby. Then around 5 1/2 months, he started regressing. He no longer used his arms and legs as actively. He could no longer hold himself up in a sitting position.

Doctors were initially puzzled, and referred the family to several hospitals in the area. Multiple tests were done, including MRIs, EEGs and a spinal tap. Blood was taken to determine whether Bryce was suffering from a genetic condition.

The family got the tragic news in November. Keith was in Pittsburgh the night before North Carolina played the Panthers when his brother, Kyle, called.

"You don't know what to say or what to do," Keith said. "We try to cherish every moment we can with him."

Both Kyle and Jenna are carriers for Krabbe disease, which affects about 1 in 100,000 births. Jim Kelly's son, Hunter, also had Krabbe disease and lived to the age of 8. When both parents are carriers, they have a 25 percent chance of delivering a baby with the disease.

[+] EnlargeBryce Heckendorf
Courtesy of Heckendorf familyThe Heckendorf family promotes making the screening for Krabbe disease a routine part of newborn tests.
Bryce was the first child born to Kyle and his wife, Jenna. Neither had any idea they were carriers for the disease until Bryce was diagnosed. Only 4 states test for Krabbe disease during routine newborn screenings, one reason why there remains so little awareness about the disease. While there is no cure, if the disease is detected at birth, bone marrow or cord blood transplants could be used as a treatment. Both the Kelly and the Heckendorf families are advocating for Krabbe disease to be included in routine newborn screenings.

Costs for treating Krabbe disease are also high even with insurance, given the various medications used, doctor visits and hospital trips. A golf tournament fundraiser and barbecue -- Birdies & Bogies for Bryce -- will be held this Saturday in Mosinee, Wisconsin. Keith and the entire family will be there. Kyle hopes Bryce is feeling well enough to attend a small portion.

In addition, Keith and his wife came up with the idea for the B. Strong bands to raise money and awareness. Several North Carolina players wore the bands in the Belk Bowl against Cincinnati. Keith coaches the quarterbacks. Each one wears the bracelet, too.

"I know for me, I wear the bracelet every day and it's a constant reminder to what's really important," Keith Heckendorf said. "We live and work in a profession that is 100 miles an hour every day of the week, every day of the year. This has been good for me to every once in a while step back and say as hard as we're working ... I'm pretty fortunate to be in the position I'm in and I'm blessed. You hate for something like that to do it for you, but this has probably brought our family so much closer."

Bryce has required 24-hour care for months. Kyle and Jenna had to leave their jobs as teachers, though Kyle plans on going back in the fall. Bryce is now fed through a button in his stomach. Feedings can take up to 2 hours because he has to eat slowly. If he eats too fast, he could vomit. Either Kyle or Jenna is always with him, mostly holding him because that stops his fussiness.

An occupational therapist, physical therapist and hospice nurse come once a week to help, along with a big support group of friends and family. But all the help in the world, all the love and support in the world, cannot change the inevitable.

Their baby is being taken from them every second of every day, and they are powerless to stop it. Just 15 months ago, Kyle and Jenna sat ready to give Bryce anything he wanted. They still do that today, only they can't give him what they want most.

So life takes on a newer, different meaning. Each day that passes becomes more important than the last. Because it means one more day with their baby.

"It's been extremely difficult knowing that day is going to come where we have to say goodbye," Kyle Heckendorf said. "But we're also thankful we are able to spend as much time with him as we possibly can. We can love him, snuggle him, give him kisses, rather than taking life for granted and something unexpected happening, where you don't have that opportunity to say goodbye.

"We're thankful for that."

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