Boy with muscular disease gets birthday tour of Lambeau Field

12-year-old has rare form of Lou Gehrig's disease

By Stephanie Brien
sbrien@greenbaypressgazette.com


When Darrin Pribbernow of New Holstein was 9 months old, doctors told his parents he had a rare infant form of Lou Gehrig's disease and wouldn't make it to age 2.


Barely able to lift his head, Pribbernow received a diagnosis of spinal muscular atrophy, a genetic disease characterized by severe muscle weakness that makes it impossible to even cough.


Now he's 12, and his family doesn't know what his future holds. They wanted to make sure his memory will live on forever at his favorite place — Lambeau Field.


On Friday, Bob Harlan, Green Bay Packers chairman, helped present Pribbernow with a tile that will be placed on Lambeau's outer walls. Beneath his name the tile reads "#4's biggest fan" with a Packers emblem engraved below.


Although the tile will not be placed until fall, his grandma, Lindy Vander Kinter, said it was important he see where the tile will go, considering his uncertain future.


"Now he knows there will always be something at Lambeau," Vander Kinter said.


Pribbernow, an avid Packers fan, rarely misses a game on TV and loves playing football video games from his wheelchair.


Harlan also gave the family a peek Friday at the Packers locker room, and Pribber-now had his picture taken in front of Brett Favre's locker.


Lisa Pharo, a research nurse at UW Hospital and Clinics, works directly with Pribbernow's doctor and helps coordinate studies on spinal muscular atrophy.


She said people with Type 2 or 3 spinal muscular atrophy can live a couple decades or longer, but they are unsure about people with Type 1, the most severe, which Pribbernow has.


With Type 1, the inner muscles between the ribs and chest are weak, and as the muscle wastes away, it can get harder to breathe, Pharo said. Patients need intense respiratory help to ensure a good life.


To protect his lungs, Pribbernow uses a machine every night that helps him get extra oxygen.


Three times a day he also uses a machine that coughs for him to clean the impurities out of his lungs, because his body is not strong enough to cough.


Sometimes in the night, his 10-year-old sister, Danielle, has to wake up to move his arm or scratch an itch. But she doesn't mind.


"It's kind of a favor for all the things he taught me to do," she said.


When she was younger, he taught her how to spell her name, and he was the one there encouraging her as she learned to ride a two-wheel bike for the first time.


The Friday trip to Lambeau wasn't Pribber-now's first experience with the Packers.


When he was about 5 years old, he attended a day at Packers training camp through the Make a Wish Foundation.
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