Buffalo Grove couple's son a 'miracle' who lived 22 years with Canavan disease

Since he was 5 months old, Maxie Randell of Buffalo Grove was a medical pioneer in the mission to cure Canavan disease.

His mother, Ilyce, said her son's entire existence has been a miracle as he fought the rare genetic disorder in which production of the nerve cell protective covering known as myelin is disrupted, preventing brain cells from properly transmitting information.

Most children with Canavan die before their 10th birthday.

Ilyce and her husband, Mike, immediately set out to change that grim prediction for their son, seeking his first gene therapy before he turned 1. Maxie was 22 when he died April 18.

If there was one blessing, Ilyce said, it came in February, when Maxie was able to make his longest road trip in a specially equipped van the family bought in 2015.

It was a five-hour drive to Decorah, Iowa, for a campus visit for Maxie's only sibling, 18-year-old Alex, who is committed to wrestle and study pre-health at Luther College.

"We bought the van when Maxie was 18," Ilyce said. "Maxie picked it himself. It's blue, his favorite color."

Looking back at photos of Maxie recently, Ilyce collected those that showed him in the van, which the family no longer needs or can afford.

"I just spent two hours scrolling through thousands of pictures taken in the last 4½ years looking for pictures specifically of Maxie in his van, because after it's gone I wanted them all in one place to look at," she said. "And I realized how many times I just snapped random pictures of him being happy in his van. I don't even remember taking most of these beautiful pictures, but I thank God I did because those fleeting moments were captured forever."

Ilyce has set up a GoFundMe called "Maxie's Miracle" with the aim to pay off the $38,700 balance of the van and then donate it to a family in need.

"I could never give away his wheelchair, but we have to give away the van. It's just not practical to drive," said Ilyce, who also has been working to give away medical equipment and supplies that now are not needed.

"Even setting up pickup times, or answering questions about details of the equipment, is excruciating," she said. "I don't want to talk about the details - it's too painful and too draining. I just want to give things away to people who need them because that's what Maxie would want."

Ilyce will never forget the trip with Mike, Alex and Maxie to Decorah.

"Alex had been there three previous times, but all four of us had never gone together," she said. "A month before, we started having Maxie train for it, and it cracked him up. We'd tell him, 'You've got to practice sitting in your wheelchair and not complaining to get out of it.'

"We taught him how to sit still, how to breathe yoga style and how to feel comfortable. We said we'd stop if there was an emergency, but we really wanted to just know if he could sit back and be OK. So he literally practiced it for five hours so that he could take the trip."

It all paid off.

"He loved being there," Ilyce said. "The whole campus and even the football field is bright blue.

"He smiled the whole way there in the van. We piled up bright blue stuff from the bookstore on his wheelchair. It was his first and only road trip. He prepared for it and loved it."

And it provided comfort to Alex.

"Now, Alex can go to school there, knowing his brother had been on that campus and approved of it," Ilyce said. "He can feel his brother's spirit knowing Maxie was physically on the campus."