How donation from rare disease foundation is helping Buffalo Grove parks become more accessible

Six years after the death of her son, who lived for 22 years with a rare inherited neurological disorder, Buffalo Grove resident Ilyce Randell is helping make her community’s parks more accessible to families affected by disabilities.

Her foundation, Canavan Research Illinois, has awarded $90,000 to the Buffalo Grove Park District to pay for new equipment and make other improvements for people with disabilities.

Maxie Randell was diagnosed at four months old with Canavan disease, which damages the brain’s white matter and interferes with the ability of nerve cells to send and receive messages. He became a medical pioneer when, at 11 months old, he became the youngest person to receive gene therapy for a neurological disease.

He died in April 2020 at 22 years old.

The park district has yet to decide on specific improvements it will make with the donation, but is seeking another $10,000 in donations to fund the work.

“The precise project will be selected based on community accessibility needs, available funding and the opportunity to make a meaningful and lasting impact,” district Executive Director Erika Strojinc said.

Ilyce Randell said she is dissolving the foundation, citing a shift in how research toward a Canavan cure is taking place. When she started the foundation in 2000, research was funded by small charities like hers. Today, pharmaceutical companies are investing in the science.

“So then we decided, after Maxie passed away, that we wanted to help people in a way that was more concrete,” she said. “We contacted the park district to find what areas of need there were.”

She initially worked with the park district following her son’s death through a $12,000 contribution to convert inaccessible park benches to accessible seating. She can see one of the benches, at Mill Creek Park, from her home.

Randell remembers how difficult it was to bring Maxie to a park during his lifetime. She is hoping to make it easier for other families.

“It was very hard to go to the park with my son in his wheelchair, because even pushing a wheelchair over grass is not easy,” she said. “And he had a big motorized wheelchair, very heavy, very bumpy. There were places physically we could not go with Maxie, and that’s heartbreaking.”

Although Randell is winding down the foundation, she is still helping people by teaching yoga at Sky Fitness in Buffalo Grove and YogaSix in Glenview.

“It’s a way to help people to move,” she said. “Maxie was my first yoga student.”

Maxie’s brother, Alex, is in a doctoral program studying to be a physical therapist. Ilyce said that path was influenced by his brother.

“He has a different level of compassion, growing up with Maxie, and a different understanding of movement and any kind of limited mobility,” she said.

Maxie remains very much on his family’s mind — his wheelchair still sits in the family living room.

To donate to the project, click on the Accessibility Project Fundraising link on the park district’s website at bgparks.org.

szalusky@dailyherald.com