Fighting the good fight to fund childhood cancer research

Many children survive childhood cancer but in some cases, they experience devastating, life-long side effects.

And you may be shocked to know how little money goes for research for the future of the tiniest patients.

Benny  Martinez is a thoughtful, caring 12-year-old.

“He always gives it 150 percent,” says his mother Michelle Martinez.  “No matter what gets thrown at this kid, he just faces it with amazing poise and grace.”

At a St Baldrick’s fundraiser last year, Benny shaved his head to raise funds and awareness for children’s cancer. But just 11 days after later, Benny himself would learn firsthand what it’s like to have the disease.

“The whole thing started unfolding when we were on vacation down in Orlando,” Michelle says.

That’s when Benny began to feel sick. His parents took him to the emergency room, where a CT scan revealed a brain tumor – a medullablastoma.

“And because of the location of the tumor they recommended that we remove the tumor,” Michelle says.  “We brought him back to Chicago for inpatient rehab and he had to learn how to walk talk swallow and he made fantastic progress.”

Benny was using a walker and he was back at school, but at the end of October, his recovery took a turn for the worse.

“We noticed significant neurological declines in his speech and movement and he was diagnosed with radiation necrosis which is a side effect solely caused by the radiation, which ironically is what cured him of the cancer,” Michelle says.

Radiation necrosis is rare.  In Benny’s case, the condition impacted his brain stem – a critical area that controls basic motor functions and breathing.

“He spent the whole month of June at Lurie’s in and out of the PICU having a lot of respiratory difficulties, Michelle says. “On Memorial Day itself he lost the last sort of mobility he had which is the use of his right finger. … So now he is a quadriplegic, but we are working on getting some mobility, motor skills back.”

With his family and therapist by his side at the Shirley Ryan Ability Lab, he’s moving forward and learning how to use subtle movements of his head to control a new wheelchair.

“Even those children who we cure unfortunately they wear the badge of their survival the rest of their life,” says Dr Jason Fangusaro, a Lurie Children’s neuro-oncologist.  “We have to focus on these rare populations because they are affected in such an extreme way.”

But there’s little money directed at pediatric cancer research.

“Most of the monies we get from the government, governmental funding for cancer go the larger amount of adult tumors or more common tumors so things like pediatric cancer in general, or brain tumors, which is even more specific within children, get very small amounts of money from government so probably less than one to five percent,” Dr Fangusaro says.

That’s why fundraising is critical and impactful. Events like the charity Run for Gus in Chicago make a difference.

“It really has been these organizations that have helped the brain tumor research world move forward in pediatrics,” Dr Fangusaro says.  “Without them, we would not be as far along as we are even though we have a ways to go and that’s why the funding is continually important for us.”

“It is amazing to me that there is so little funding,” Michelle says.  “We have a front row seat to Benny and his road to recovery but we’ve met some amazing kids along the way. …  We can do something about this and these kids deserve it.”

The Run for Gus is Thursday night at Diversey Harbor with festivities beginning at 5:30 p.m.  More information on the run at runforgus.org and Lurie's website.

The Young Associates Board is an affiliated organization of Ann & Robert H. Lurie Children’s Hospital of Chicago that is committed to providing hope for children with brain tumors.  You can find more information on their Facebook page.