A Grosse Pointe fourth-grader's experience with a rare disease inspired her to write a letter that won first place in a national writing contest.
And Claire Juip, 9, is herself an inspiration — to her family, to her friends and to the community around her school, St. Paul Catholic School in Grosse Pointe Farms.
She and her brother, 11-year-old Jake, have Friedreich's ataxia. The genetic condition causes progressive damage to the parts of the nervous system involved in muscle control.
Despite the prospect of likely having to use a wheelchair someday, both children are filled with optimism, working to educate people about the condition and participating in sometimes painful medical studies in the hope of helping others.
"I was pretty sad (when diagnosed) because I knew I was going to be in a wheelchair, and I was also kind of optimistic because I didn’t know what the future would be," Claire said, smiling on her school's playground in the late spring sunshine.
"If I can help other people, that means there might be a cure."
St. Paul Catholic School student Claire Juip, 9, center right, smiles as she talks with her classmates after recess on Wednesday, May 31, 2017 at St. Paul Catholic School in Grosse Pointe Farms. (Photo: Rachel Woolf, Special to the Free Press)
Claire is a well-liked student who excels in reading, math and science. She runs straight for the swings at recess and loves the color yellow — "because it's cheery."
On May 11, she got exciting news: She won the Library of Congress' annual Letters about Literature national contest for her age group, beating out more than 13,400 other kids.
The contest involves students writing letters to authors of books that have impacted them. Claire wrote hers to R.J. Palacio, the author of "Wonder," a story about a boy named Auggie who was born with a rare chromosomal disorder that causes distorted facial features.
Claire said her experience with the book changed over time. At first, it reminded her about the importance of being nice to people who are different.
She read the book again after Jake was diagnosed with Friedreich's ataxia last year. She said it helped her better understand what her brother was going through and how she could help him.
Then she read it a third time after her own diagnosis that November.
"Right now, nobody knows that I have FA and I feel nervous like Auggie because I am worried that once people find out they will treat me differently," Claire wrote in the letter. She said she is concerned about being teased.
She also wrote: "I understand why Auggie wanted to be ordinary, because I remember what it was like to be ordinary before I was diagnosed with FA. I can understand what Auggie felt like in his sadness and in his anger.
"Now that I can see myself how Auggie sees himself, your book means more to me than ever."
The prizes are expected to be announced this week. In the past, winners have been invited to the Library of Congress to read their letters to the book authors.
May 11 was a special day for another reason. Hours before the contest winners were announced, Claire revealed her disease to her classmates through a homemade video.
"I just wanted to let you know that I'm still the same person that I was before you watched this video," she says
A long journey
The early, subtle signs of FA began to show when Jake was 3. His parents, Randy and Maureen Juip, noticed he wasn't as coordinated as other kids his age.
"We just thought he wasn't athletic," Maureen Juip said.
As he got older, Jake sometimes stumbled when he walked. He struggled playing sports.
After a year of physical therapy that started when he was 9, the family visited a second neurologist who, in June 2016, told them she suspected Friedreich's ataxia. Genetic tests confirmed the diagnosis in September.
"When you are told there is no treatment, and there is no cure, it takes your breath away," Juip said.
About one in 50,000 people in the U.S. have FA, according to the Friedreich's Ataxia Research Alliance.
Signs and symptoms include progressive loss of coordination, fatigue and scoliosis. As the disease progresses, problems with vision, hearing and speaking become more prevalent.
FA can also lead to serious heart problems.
The disease is inherited from both parents, who, in this case, are believed to be silent carriers.
The Juips made the tough decision to get all of their children — Claire, along with Catie, 8, Ellie, 6, and Tommy, 4 — tested, even though no one else was showing symptoms.
All the tests came back negative, except for Claire's.
The family sprang into action, or "fight mode," as Juip calls it. They began researching the disease and connecting with medical experts in other states.
The discussions at home were honest, yet positive.
"We have talked a lot about how we can't control what challenges life is going to throw at you, but you can control how you react to those challenges," Juip said.
Jake and Claire have chosen to participate in more than a half-dozen biomarker studies, which measure a disease's progression, and have traveled to hospitals in New York and Pennsylvania.
"The clinical trial I'm in right now, I can't tell you about because we're in the middle of it," Claire told the Free Press matter-of-factly.
Brother and sister say they appreciate having a partner in their journey.
"It’s really nice because if I did it alone and traveled alone, it would be very lonely," Claire said.
Jake said he was unhappy when he heard his sister also had the disease, "because I felt like this was my thing, and I would fight it alone. But now I've learned that you can’t fight it alone."
Jake struggles with fatigue and has challenges with balance and coordination. Claire's symptoms are less pronounced; she sometimes feels less steady than she used to while walking on stairs.
The family draws support from the community around St. Paul Catholic, a pre-K through 8 school with 316 students.
Jake and Claire are active in sports, with coaches who are encouraging and sensitive. Claire was on the tennis team and Jake, a fifth-grader, was on the lacrosse team. Both play basketball.
The school's annual Fun Run typically raises funds for the athletic program. This year, $10,000 from the event was donated to the Friedreich's Ataxia Research Alliance in honor of Claire and Jake.
The proceeds from a recent free dress day — where kids can pay $1 to wear regular clothes instead of their school uniforms — also went to the alliance.
"It has really brought the school together, and everybody has rallied around them," Claire's teacher, Kristin Perlin, said. "We all want to find a way to help this family."
Claire wrote her award-winning letter last fall, working one on one with Perlin during recesses. At the time, her disease was still a secret, known only to her family and a few other people.
"It kind of felt good, because then I could express my feelings on paper, and I could help raise awareness" about FA, she said.
On a recent sunny afternoon on the playground, Claire soared on the swings and Jake shot hoops, both surrounded by friends.
"It's like nothing has changed," their neighbor and friend Mia Pyenta, 11, said.
Claire and Jake say they're hopeful that scientists will one day find a cure.
Today, they're more focused on school and family and friends than the disease.
"(FA) is just one thing, but I have so many other things going on in life, and I can't let that one thing get me down," Jake said. "Because you can’t choose what life gives you, but you can choose what attitude you give toward life."
Contact Ann Zaniewski: 313-222-6594 or firstname.lastname@example.org. Follow her on Twitter @AnnZaniewski.
HOW TO HELP
For more information about Friedreich's Ataxia or to donate to help research, contact the Friedreich's Ataxia Research Alliance at www.curefa.org or 484-879-6160. To make a donation specifically in honor of Jake and Claire, visit curefa.org/juip. Donations via check or money order can be mailed to FARA, 533 W. Uwchlan Ave., Downingtown, PA 19335.
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