Runners Hold Fundraiser for Downers Grove Boy Battling Rare Disease

Downers Grove resident Christine Ferris loves to run, and she loves it even more when she's helping families in need.

For the past four years, Ferris and her friends have participated in the Soldier Field 10 Mile, an annual race that begins and ends on the Chicago Bears' football field. Rather than using the run to raise money for a large organizations like the American Cancer Society, Ferris prefers to focus her efforts on her own community.

Earlier this year, a friend told Ferris about a 9-year-old boy from Downers Grove named Jacob Kowalik, who was diagnosed with Myelodysplastic Syndrome (MDS), or pre-leukemia AML, in 2009. He received a bone marrow transplant that year, but was then diagnosed with Graft-Versus-Host Disease (GVHD), a complication that occurs after procedures such as bone marrow transplants in which white blood cells in the donated marrow reject the recipient.

The GVHD has taken its toll on Jacob's body. The disease hit his stomach first, causing him to shed his intestinal lining and be hospitalized for 100 days. After the stomach, it affected his eyes, forcing him to have cataract surgery. The GVHD also killed off all of Jacob's hair follicles, and had a severe effect on his skin—causing him to be treated as a burn victim in the Intensive Care Unit.

Because there is no cure for GVHD, Jacob will continue to deal with its effects for the foreseeable future. He is currently in a wheelchair due to an eight-week stint in the ICU, but is working toward using a walker. He receives dialysis treatments twice a week, and is using special contact lenses to counter the disease's impact on his eyes.

After hearing Jacob's story, there was no doubt in Ferris' mind who her team would run for this year.

"It just broke my heart to hear about everything this kid has gone through, not to mention his parents," Ferris said. "I couldn't think of anyone else more deserving of our team's help."

So far, Ferris has recruited more than 70 people for her "Run for Jacob" team. The group is currently training for the May 25 race at Soldier Field, but they are also gearing up for a pre-race event at Lemon Tree Grocer, where Ferris has held her fundraisers for the past three years. 

Jacob's fundraiser will be held Friday, May 17, at 7:30 p.m. The event includes hors d'oeuvres, raffles and live music, as well as drink specials and a cash bar. Ten percent of all drink sales will be donated to Run for Jacob.

Tickets cost $25 online or $30 at the door. 

"The guys from Lemon Tree have been so kind and generous to let me use their space for these fundraisers," Ferris said. "I think it makes it special because it's a real community effort to help Jacob."

Jacob's mom, Jennifer Kowalik, said she was overwhelmed with gratitude when she learned about the fundraiser.

"Christine is a sweetheart, and I'm just so touched that she has taken it upon herself to organize all of this for us," Kowalik said. "We are beyond blessed to have this outpouring of support and love from our community. We wouldn't be where we are today without all the people around us who have pushed us through the hard times."

This year, Ferris' fundraiser has taken on a superhero theme, a nod to Jacob's "superhero-like" fight against MDS and GVHD.

"Jacob has always loved superheroes—he loves Spider-Man—so when he was in the ICU and we thought we were going to lose him, we adopted that nickname for him," Kowalik said. "His hero powers came out and pushed him through."

Ferris said Jacob's bravery has pushed the group to find their own inner-superheroes.

"The reason I do this every year is because I want people to conquer their fears and be strong for someone else," Ferris said. "It's not easy to run 10 miles, in fact sometimes it's really painful, so we have to be superheroes. Jacob gives us the strength to run every day." 

Despite his illness, Jacob is still a regular 9-year-old in many ways. He attends third-grade classes three days a week at Highland Elementary School, loves to be with his friends, and is an avid fan of art and music.

"I think that he wants to be a normal kid more than anything," Jennifer Kowalik said. "He has his bad days when he gets completely frustrated with all the medicine and treatments, but at the end of the day we just remind him that he's a survivor."

Aside from the monetary assistance Run for Jacob will provide, the most rewarding aspect of the fundraiser has been getting to know the Kowaliks, Ferris said.

"You develop a relationship with these families," Ferris said. "You get to know them and their struggles, and you just want to do whatever you can to make their lives a little better. I've been extremely fortunate in my life to have three healthy boys, so I feel like I need to do what I can to give back."

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