She’s not a runner, but when an orphan disease struck her son, Jacque DenUyl ran for the cure.
“This story isn’t about me,” says Wilmette’s Jacque DenUyl as she sits down, hands over perfectly organized literature, and pulls out her reading glasses for our Oct. 22 interview. “It’s about a bunch of Tiger Moms and the Cure JM Foundation. I’m just the R.R.A.—Raving Roving Ambassador.”
She quickly proves herself wrong—twice. Her articulate presentation is the opposite of raving. And most definitely the story is about her Little Engine That Could efforts, which inspired so many others that the foundation recently committed to funding more than $1 million worth of research to find a cure for the orphan disease Juvenile Myositis (JM).
Only 5,000 kids in the United States suffer from JM, an autoimmune disorder that causes extreme muscle weakness, pain, fatigue and problems with swallowing, digestion, lungs and the heart. The condition also sometimes causes rashes, usually around the eyes. If it’s not diagnosed early and treated aggressively, it can be lethal or debilitating for life.
DenUyl came to her ambassadorship honestly. JM struck her son, Eric, in 1999, toward the end of fifth grade. Disbelief and pain etch her face as she describes the speed and severity of its onset. “He couldn’t even get himself off the bus. And soon he literally couldn’t get up from the floor.”
Coincidently, a leading JM expert, Dr. Lauren Pachman, a pediatric rheumatologist at Northwestern University and Children’s Memorial Medical Center, lives four blocks from DenUyl in Wilmette. Curing JM became Pachman’s passion after treating her first patient with it 30 years ago. She now takes care of more than 450 children from around the world with this rare disease. The DenUyls quickly found their way to her care. However, the treatment is almost as bad as the disease—extraordinarily high doses of prednisone and chemotherapy. Eric suffered through the illness and the “cure” for over two years.
“We thought he was cured,” DenUyl says, “but really JM was still sitting inside him.”
On Oct. 22, 2005 (yes, exactly two years before the date of our meeting), in the fall of his senior year at New Trier High School, Eric complained, “I think my disease is coming back. But I don’t have time to go to the doctor!”
She falters, then starts crying. “It just exploded out again—just exploded.” She explains, “My 18-year-old son couldn’t even peel an orange.”
DenUyl describes the five years between JM bouts as the “While We Were Sleeping” phase. Fortunately, while the DenUyl family was sleeping, some of those Tiger Moms mentioned earlier launched the Cure JM Foundation. DenUyl welcomed the opportunity to make a difference and joined the board in January 2006.
Tiger Mom Rhonda McKeever, a vice president of PepsiCo in New York City, asked DenUyl to join her as a charity runner for Cure JM in the 2006 LaSalle Bank Chicago Marathon.
DenUyl objected, “I’m 54, the race is only 18 weeks away, and I hate to run. I can’t possibly do that.” But Wilmette friend Laura Cornell learned about the opportunity and told her, “Oh yes you can do that, and I’ll train you!”
And DenUyl did do it. Did she ever do it.
Better yet, the night before, Oct. 22, 2006, Eric announced to the crowd of more than 200 Cure JM runners that he would start the race with his family. Only one year after the second battle with JM, Eric ran more than 11 miles.
With the inspiring company of Eric and the others, Jacque completed the 26.2 miles in just over five hours and 40 minutes. The JM group raised so much money and attention that DenUyl was featured in the program for this year’s LaSalle Bank Chicago Marathon saying, “I was afraid I’d be the last person in front of the street sweeper (in 2006). I am not a runner, but when your kid is sick you run for your life!”
Her efforts led to Cure JM speaking engagements at the 2006 and 2007 International Conferences of Rheumatologists. Last month, the DenUyl family and other Cure JM runners in their Gatorade-sponsored neon-green shirts stood out at the Washington, D.C., marathon—the night before which they had met with a panel of National Institutes Of Health rheumatology experts.
“This Cure JM effort just keeps going!” DenUyl enthuses. “It keeps going and growing. It’s so exciting.” The $1 million commitment to the Center of Excellence in JM Research at Children’s Memorial Research Center is the largest donation ever in support of research to find a cure for this devastating, rare childhood illness. That alone is quite an accomplishment. But running, roving and fund-raising isn’t all that DenUyl does to make a difference in fighting JM. “This is my job,” DenUyl adds. “And it’s an incredible experience!”
Pachman invited her to become the first-ever Children’s Memorial ParentWISE volunteer at the weekly JM Outpatient Clinic. DenUyl talks with patients and their families—listening, informing, supporting and empathizing. She particularly connects with teenagers and young adults.
She particularly enjoys telling families about Eric, who is once again medicine-free and enjoying his sophomore year at the University of San Diego. His success story gives hope to parents just starting their families’ struggle against JM.
For more information about Juvenile Myositis and the Cure JM Foundation, please visit www.CureJM.com.
Note: Original date published, November 29, 2007
