BEVERLY — Amy McNicholas wants the foundation started in remembrance of her son, John, put out of business.
She and her husband, Ed, founded the John McNicholas Pediatric Brain Tumor Foundation after their 15-year-old son died. He was diagnosed with a malignant brain tumor on March 31, 2010, and died 10 months later.
The foundation, also known as "Live Like John," has become a powerful force in advocating for research on pediatric brain tumors. The group has a medical advisory board and will award a $200,000 grant to a doctor making the greatest strides in this often overlooked field on Jan. 13.
Amy McNicholas believes such efforts will someday result in a cure, at which point she'd happily shut down the foundation she runs out of her home in North Beverly.
"We are heartbroken that John lost his battle, but his journey revealed there’s a war to be won," McNicholas explains on Live Like John's Web site.
In support of this effort, the proceeds from the Beverly Hills Turkey Trot 5K and Family Walk presented by the PrivateBank on Nov. 30 will be split evenly between Live Like John and the 19th Ward Youth Foundation, which hosts events throughout the area for kids, including an annual dodge ball tournament and a children's film festival.
John McNicholas isn't alone in his deadly diagnosis. Five children from the Beverly area have died in the past 10 years from brain tumors, including Maeve McNicholas. She died on July 29, 2004 — less than 36 hours after being diagnosed with a brain tumor.
Maeve McNicholas and John McNicholas aren't related, though they both are remembered by foundations strongly supported by family and friends throughout Beverly, Morgan Park and Mount Greenwood.
Amy McNicholas hopes that her foundation and others throughout the country can come together to improve the outcomes of children diagnosed with brain tumors. Her opinion is the best way to accomplish this is in conjunction with the Ann and Robert H. Lurie Children's Hospital of Chicago.
She wants to make Lurie Hospital the epicenter of research and treatment for pediatric brain tumors. The renowned hospital is already among the top five medical institutions for treating the disease, and targeted funding could easily put the Streeterville hospital at the top of the mountain, McNicholas said.
"I feel like they are in a great place to advance research," McNicholas said.
Research remains the focus for Live Like John, as the treatment of pediatric brain tumors has gone unchanged for 30 years. In John's case, radiation treatments to his brain were the only option. The therapy robbed him of any capacity to display emotion, as well as his ability to walk, swallow and eventually breathe.
John's crushing treatment also required long stays at Children's Memorial Hospital, which changed its name to Lurie Children's Hospital when it moved to Streeterville in 2012. There's plenty of activities available for younger children at the hospital, but 15-year-old John was often bored.
"Within the pediatric realm, teenagers are really the orphan age," McNicholas said.
Thus, she used a portion of the Live Like John money to buy 30 iPads, loaded with fun apps, games and music. "John's Cart of Fun" is now available to all teens at Lurie, many of whom spend upward of 100 days each year undergoing treatment.
As the annual Turkey Trot approaches, Amy McNicholas continues to tell the story of her son. She encourages other parents who've lost children to brain tumors to do the same. She believes talking about brain tumors will draw attention to the need for better treatment and ultimately a cure.
"One story is tragic, 12 or 20 is powerful," she said.
