Mosinee community rallies for family of dying child
MOSINEE –When Bryce Thomas Heckendorf was born 14 months ago, the entire Heckendorf clan was excited.
Bryce is the son of Kyle and Jenna Heckendorf of Dodgeville, and Kyle is the middle son of Bart and Wendy Heckendorf of Mosinee. Anyone who has lived in Mosinee and followed local sports knows the Heckendorf name — Kyle, his older brother, Keith, and younger brother, Kole, were standout high school athletes for Mosinee High School, each chosen as an all-state player.
Keith became all-American at St. Cloud State University in Minnesota and now coaches at North Carolina University; Kyle played baseball at the University of Wisconsin-Oshkosh and now is a teacher and football coach in Spring Green. Kole played football with five teams in the NFL and now is a receivers coach at St. John's University in Collegeville, Minn.
They're all strong, athletic and smart men, and they envisioned a similar future for baby Bryce. So it was shocking last November when they received the worst news that parents, grandparents and uncles could receive — Bryce was diagnosed with Krabbe disease, a rare genetic disorder that inhibits Bryce's production of myelin, the material that protects nerve fibers.
The disease is a fatal one. On average, babies with Krabbe disease don't live beyond a year or two.
The friends and family members of the Heckendorfs are going all out in planning two related fundraising events Saturday for It's a Day for Bryce, a golf outing and a barbecue/dance at Riverside Park. Proceeds from both events will go toward efforts to ensure infants are tested for Krabbe disease, research and the care of Bryce.
"We're just so thankful to have friends and family and community to help us get through this difficult time," Kyle said. "We want to enjoy every day we have with Bryce. There are so many stresses that go along with this. Having friends and family supporting us just makes us so thankful. ... We're grateful for what everybody is doing."
The event started out as a low-key golf outing, but it since has ballooned, Bart said.
Paul Nievinski, the Mosinee High School football coach and a teacher at Mosinee Middle School, is just one of many community members who know the Heckendorfs and are helping to organize the events.
"We want this to be big," Nievinski said.
Before the diagnosis, Bart said, he and his sons would gather around Bryce, his first grandchild, and they would talk about whether he would be a receiver or quarterback.
"We're a football family, and it was just so exciting," Bart said. "And then when they tell you this little boy is going to die, there are no words to describe how devastating that was. ... This disease is the most horrible thing."
At this point, Bryce is blind, and is in effect paralyzed from his neck down.
"He's like a newborn," Bart said.
Still, the Heckendorf family is finding strength in one another and the community in this difficult time.
"We are a family who has a whole lot of faith. We have been blessed in so many different ways. ... All the friends and support from the communities, it's just been unreal," Bart said. "(Bryce's) journey is going to be short, but he's been extremely loved."
Keith Uhlig can be reached at 715-845-0651. Find him on Twitter as @UhligK.
If you go
It's a Day for Bryce includes a golf tourney and a picnic/music event, both being held on Saturday.
What: Birdies & Bogies for Bryce Golf Outing, a four-person, 18-hole scramble
When: Shotgun start at 9 a.m. Registration at 8:30 a.m.
Where: Indianhead Golf Course, 966 Indianhead Drive, Mosinee
Cost: $100 per player; includes green fee, golf cart, prizes, lunch on the course and after-golf chicken dinner at River Park in Mosinee.
What: Picnic and music
When: 3 p.m. to 10 p.m.
Where: River Park in Mosinee
You should know: The park event includes a chicken dinner by Bob's Catering for $10; music by String Cheese from 3 p.m. to 6 p.m. and Consult the Briefcase from 7 p.m. to 10 p.m. and pig-out cookout by Piggly Wiggly. The raffles and silent auction also will be offered.
For more information, call Jeff Campo at 715-551-5859 or Bart Heckendorf, 715-693-6810.