DOWNERS GROVE – For Tracy and Jennifer VanHoutan of Downers Grove, this year’s Noah's Hope Cupcake Classic 5K was especially difficult. Their daughter Laine wasn’t at the event.
Laine died March 20 following a battle with Batten disease, a rare neurological disorder that has no cure and is fatal.
The VanHoutans learned Laine had the disease in 2009, five months after her older brother, Noah, was diagnosed. Noah died in March 2016.
Children with Batten disease progressively lose their sight and motor skills and typically die between the ages of 8 and 12.
Despite the void created by Laine’s absence, the VanHoutans drew strength from support offered by the hundreds of people who showed up May 20 at McCollum Park in Downers Grove to participate in the run.
“We are very, extremely grateful,” Tracy VanHoutan said. "Our community is made up of moms and dads that want to do something."
More than 700 children and adults registered for the race, which translated into $20,000 for the Noah’s Hope Foundation. Proceeds from sponsorships should add another $5,000 to the total, VanHoutan said.
“The total money is still coming in,” he said.
The money will be used to fund research into the rare illness. For example, a medical institution in Missouri is embarking on a study of spinal cord pathology and needs $100,000. Money raised at the Cupcake Classic will help fund the work, VanHoutan said.
“We’re always looking for new projects,” he said.
Many of the projects are identified by the Batten Disease Support and Research Foundation in Columbus, Ohio. VanHoutan sat on the foundation’s board for six years.
The past several years have been difficult ones for the VanHoutans, but they rarely wavered in their decision to honor their children's memory through the work of their foundation.
"We went through that early on," VanHoutan said. "After Laine was diagnosed, we asked, 'Should we even be doing this?' "
But significant progress has been made. Research has led to the development of a drug designed to treat children with late infantile neuronal ceroid lipofuscinosis type 2, a form of Batten disease.
"We've been extremely fortunate," VanHoutan said.
Although his children could not take advantage of the drug, he takes satisfaction in meeting children who have benefited from the treatment.
"We built Noah's Hope," VanHoutan said. "We can fund a significant amount of research every year."
In addition to the 5K, the foundation holds an annual fall gala, and proceeds from the Downers Grove Fire Department's golf outing are donated to Noah's Hope.