Annual fun run honors two St. Paul students

By: Maria Allard | Grosse Pointe Times | Published May 30, 2017

GROSSE POINTE FARMS —  Every year, the St. Paul Athletic Club holds an annual fun run to generate funding for the athletic programs at St. Paul on the Lake Catholic School.

This year, fun run organizers decided to instead raise money for another cause: Friedreich’s Ataxia. FA is a rare mitochondrial disease that has affected two St. Paul students, Jake and Claire Juip. This year’s seventh annual fun run was organized by the St. Paul Athletic Club, under the leadership of Dina Desjardins and Biz Williamson.

According to Jake and Claire Juip’s mom, Maureen Juip, there were almost 300 runners and walkers in the May 20 event. According to Desjardins, the event raised $10,000 for FARA after expenses. Friedreich’s Ataxia is a progressive, degenerative neuromuscular disease. The symptoms of FA typically begin between 5 and 15 years of age. FA patients gradually lose their ability to walk.

“We are not taking any money this year for the athletic program,” Desjardins said in an email. Money was raised from admission fees of participants.

FARA is supporting research designed to improve the quality and length of life for those diagnosed with Friedreich’s Ataxia and that will lead to treatments that eliminate its symptoms. According to the FARA website at www.cure fa.org, FA is an inherited or single gene disorder, and mutations or DNA changes in the gene known as FXN cause FA.

Jake Juip, 11, is in the fifth grade and is a member of the St. Paul lacrosse team. Claire Juip, 9, is a fourth-grade student and a member of the school’s tennis team.

Jake was diagnosed with FA after Maureen and husband Randy Juip noticed their oldest son struggling with his balance when he walked and with his overall coordination. After a physical examination, they were told that some kids just aren’t coordinated, but Maureen Juip felt more testing was needed to get to the root of the problem.

“Following my mom gut, I knew there was something more going on,” Maureen Juip said. “We went to a neurologist.”

That was when Jake was diagnosed with FA.

“It took our breath away. It is a devastating diagnosis. We talked with the whole family, and no one has ever heard of it,” Maureen Juip said. “As the disease progresses, it will require him to use a wheelchair by his later teens. It will affect his heart and his speech. It can cause scoliosis in the back. There is no treatment. There is no cure. The best we can do is raise money and hope there is a breakthrough.”

After Jake’s diagnosis, Maureen and Randy Juip had Claire and their other three children — Catie, 8; Ellie, 6; and Tommy, 4 — tested for FA. Claire also was diagnosed with FA, but not the other three Juip children.

“FARA is very well-organized,” Maureen Juip said. “We’re optimistic within their lifetime they’ll have a breakthrough.”

At the fun run, Claire joined the other participants as they ran and walked through the neighborhood — which started from the school parking lot and included Grosse Pointe Boulevard and Lake Shore Drive on the route — while Jake waited at the finish line to greet everyone at the end of their treks. He also announced the times of runners and walkers as they returned. Jake said that while living with FA, he’s still able to do things that he likes to do, but he has to move at a slower pace.

“When I play lacrosse, I’m not able to catch up with the other kids,” he said.

Maureen Juip said the other teammates are always supportive of him. Jake said he likes attending school at St. Paul. 

“The people here are really nice,” he said. “I like the administrations, and there are really good teachers.”

The Juip family has participated in the St. Paul fun run for the past 3 years. 

“We were honored to participate this year, and we are so grateful to the entire community who came out to support Jake, Claire and FA research,” Maureen Juip said. “We have been overwhelmed by the kindness we have been shown. I think we find peace in our faith.”

Jake and Claire have each made YouTube videos that explain FA. Both videos can be accessed by a Google search.

To make a donation to FARA, visit the website at www.curefa.org.