A 6-year-old from the northern Chicago suburb of Glenview has sparked public outpouring of support that is making its way to the Westmont area.

Last year, blond-haired Matthew “Matty” DeVine was a Star Wars-loving take-charge 5-year-old whose affinity for calling the shots at his preschool earned him the nickname the “Mayor” from his teachers.

However in June, Matty’s parents, Jenn and Greg DeVine, received a crushing blow — their son has a rare and deadly blood disorder called myelodysplastic syndrome with monosomy 7.

“The kind he has is very rare, especially in children,” said Katharina Harf, vice president of DKMS Americas, the largest bone marrow donor organization in the world. “In the U.S., 15,000 people are diagnosed per year, and 80 percent of those cases are in people over age 60.”

Matty needs a bone marrow transplant to have a 60 to 70 percent chance at survival, Harf said.
“Without a transplant, it doesn’t look so good,” she added.

Typically a patient’s family members are the most likely candidates to be marrow donors; however, no one in Matty’s family has been a match. Harf said about one-third of blood cancer patients find a match outside their family.

Though the odds might not entice a betting man, friends of the family have launched a series of bone marrow drives aimed at the public.

At the drives, a tissue sample is obtained from donors by swabbing the inner cheek. It’s then sent to Life Source for analysis and entered into a national registry. If a person is not a match for Matty, they could be for one of the thousands of others awaiting a transplant. The cost of tissue testing is $55, however no donors will be turned away. Monetary contributions are accepted to cover the costs of the tests.

The DeVines’ neighbor and close family friend Debbie Natoli was part of a group that organized 12 drives this summer as far away as the Quad Cities and resulting in the addition of more than 950 people to the national donor registry.

“I’m motivated by the one glimpse of hope that we can find the right match,” she said. “It’s amazing the amount of people that have helped with this. It can be hard to get people to rally around a person that doesn’t live in the community.”

Natoli recruited friend Raechel Pfotenhauer to organize the drive in Westmont. Pfotenhauer, a Downers Grove resident whose husband is the pastor at Bethel Lutheran Church, has been dedicated to the task of drumming up local awareness for Matty, and said she has gotten many enthusiastic responses.

“You think, what if I was the mother of this child? Or what if one day that was my child? I believe that’s what Christ calls us to do. I think it’s a really tangible way to love your neighbor as yourself, even the neighbor you don’t know,” Pfotenhauer said.