Like any expecting grandparents, Bart and Wendy Heckendorf were ecstatic to hear their son Kyle and wife Jenna were going to have their first child.
"We've had 3 boys so it was interesting cause we got match box cars, so we knew it was a little boy," Wendy said smiling.
"And than he was born May 6th, 2013. Pretty exciting day. You know the whole family was just ecstatic we had this new little person in our lives and it was all good."
Just 6 months later, things weren't all good for baby Bryce.
"It was devastating. Kyle called and he told us what it was and we knew immediately that that was really bad and to be honest I just started crying," said Bart.
Bart Heckendorf wasn't the only one brought to tears that day.
November 19th, 2013.
The couple would learn their 6-month old grandson was diagnosed with a rare, degenerative disorder called Krabbe disease.
"It's just been hard. It's been hard right from the beginning," said Wendy.
Krabbe disease impairs the growth of myelin, which is the protective coating around nerve cells in the brain and throughout the nervous system. The symptoms of Krabbe usually begin before the age of 1 year.
The vibrant little boy who loved to read books and play with his toy football like all great Heckendorfs do was slowly starting to regress.
"Jenna just kept saying there's something not quite right. He was pretty active. He was starting to roll over and kick and he was starting to hit at the little toys and would pound at the books if you'd read and he was just starting to slowly not do those things, more content to not be moving much," said Wendy.
Bryce's muscles have now weakened to the point where he can no longer move his arms, legs or even show that unforgettable smile.
Prior to his diagnosis, Bryce's parents went through a multitude of different doctors and tests, but each time they were left without an answer.
Bart and Wendy are both amazed and proud of not only how strong their grandson Bryce has fought, but Mom and Dad as well.
"I mean they are just amazing parents. They're doing every single thing that they can do to make Bryce's life as good as it can be," said Bart.
Their grandson's legacy will live on through the B Strong Foundation, which the Heckendorfs started, In hopes of gaining financial support to continue Bryce's care with a specialist in Pittsburgh.
The foundation's logo features Bryce's favorite animal.. a shark.
"His favorite book was commotion in the ocean and when you got to the shark page he would just light up," said Bart.
The second mission of B Strong is to raise awareness about the need for universal newborn screenings. Currently,only 4 states test for Krabbe in newborn screening panels, Wisconsin is not one of them.
If detected at birth, this disease can be treated with cord blood or bone marrow transplants and children can go on to live normal lives.
Birdies & Bogies for BRYCE!
When: July 12, 2014
Where: Indianhead Golf Course – Mosinee, WI // Picnic & Concert to follow in River Park
Time: Golf – 8:30am // Picnic & Concert – 3pm-10pm
Cost: Golf – $100/golfer (Includes green fees, cart, lunch at course and dinner that night at the park) // For the non-golfers – Chicken Dinner in Park Ticket – $10 (4pm-6pm)
There will be a raffle and auction with prizes from both friends and family donations and sponsors.
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