GVSU SAAC partners with Make-A-Wish to visit two-year old with rare illness
Mar 23, 2017
There can be many ways to define success today. Most definitions include reaching a certain career status, attaining a specific level of wealth or reaching a sustainable level of happiness.
But for two-year old Kaleb Fry, who suffers from a rare condition called polymicrogyria, success may be as simple as making it to the next day alive.
“Whether it’s days or weeks without experiencing a seizure, having some huge medical event or going to the hospital, we’ve had to learn how to measure success differently now,” said Kaleb’s father, Ryan Fry. “In the last two weeks, (the doctors) said the initial estimate of six months left to live was too aggressive and looking more towards four months.
“So at this point, we don’t even know if he’ll make his third birthday (on March 30).”
After realizing the severity of his condition, the Make-A-Wish Foundation quickly partnered with Grand Valley State University’s Student Athlete Advisory Committee (SAAC) to visit Kaleb Fry, his four-year old brother Owen Fry and the rest of the Fry family Friday, March 17.
Members of the SAAC and Louie the Laker arrived with a basket full of Laker apparel for Kaleb Fry and the family, as well as talking to him and an impromptu push-up contest between Louie and Owen Fry. Players from the football team even made a card highlighted with bright colors and Kaleb’s name, included with signatures and get-well messages inside.
Ryan Fry said the SAAC’s efforts were much more than just a simple visit.
“For that 45 minutes to an hour, nothing else mattered to us,” Ryan Fry said. “Kaleb was happy, engaging and smiling more than his usual self. The family wasn’t bothered for an hour. It was very rewarding to see.”
Polymicrogyria is a condition characterized by abnormal development of the brain before birth where the brain develops too many small folds called gyri. The condition causes electrical activity in the brain that affects nerve endings which can cause seizures.
While most cases only affect one region of the brain, Kaleb Fry’s rare condition affects both hemispheres creating more severe neurological problems. He doesn’t have the ability to eat, breath, walk, or hold up his head on his own.
After discovering their son’s ailment three months after birth, the Fry family had to adapt their house and lifestyle around the condition. Changes included installing an intensive care unit in their house, being always prepared to transport him to the hospital and sacrificing their social life.
“I’ve always prided myself on being a good father and husband. Now, it really brings a full picture into it,” Ryan Fry said. “We don’t really go out as a family anymore. If we go anywhere, we have five different pieces of equipment and a bunch of emergency meds in case something does happen.
“That being said, we have to essentially take a U-Haul with us to transport all the equipment we need if we do go out.”
With Kaleb Fry’s time now numbered, the Fry family has begun to focus on one question:
“Getting in that mindset of how can we impact what we’re doing in our own lives and help other. That’s what really carried us through,” Ryan Fry said.
The family has been in talk with the polymicrogyria foundation and a children’s hospital out in Seattle that has the leading researcher of the condition. Once Kaleb Fry passes, the family decided to donate his brain as a donation for study in attempt discover the gene issue that caused it.
“We’re going to deeply miss him, but if we can help other people along that way, then that’s what we’re going to do,” Ryan Fry said.
When SAAC president Kira Dosenberry visited the family, the thing that stuck out most was Kaleb Fry’s infectious smile.
“We walked in and the family was so just welcoming,” Dosenberry said. “We came with a whole bunch of gifts, including a ‘Louie the Laker’ t-shirt in his size. The mom said I could lay the shirt on top of him, and his face just lit up the minute we put it down.”
The SAAC raised $7,000 during the 2015-16 school year towards Make-A-Wish foundation, and Dosenberry was humbled to see the effect of the group hands-on. The group even created a Go-Fund-Me fundraiser, which has accumulated around $1,000 since Wednesday, Feb. 22.
“It was just an amazing experience to see the ability our hard work of fundraising has to benefit others,” Dosenberry said.
Besides his illness, the family wants Kaleb Fry’s legacy to be known as a kid who always had a smile on his face. He has even been known to smile and laugh at “90s gangster rap” on Pandora Radio that his father puts on.
“We’re about raising awareness,” Ryan Fry said. “We know it might not impact our situation, but long term if we can help someone down the road, we just want to leave a legacy in Kaleb’s honor.”
To donate for SAAC’s Make-A-Wish campaign, go to https://www.gofundme.com/gvsu-saac-makeawish