GRAND RAPIDS, Mich. — When Milan Capobianco got sick with cancer at just 6 years old, her parents thought for sure some hospital out there would be able to treat her.
But Helen DeVos, Mayo Clinic and St. Jude's couldn't treat Milan's cancer. No treatment was available for DIPG, a rare brain cancer with no known cure.
That was more than 12 years ago. Milan died, as every child diagnosed with DIPG does. The diagnosis in itself is a death sentence.
“You’re sent home with your child to die,” Sharyn Capobianco said.
Sharyn, Milan's mother, couldn't understand why no one could help her sick child.
Ever since then, Sharyn's been on a mission: to make sure eventually, kids can beat DIPG.
Sharyn started asking people if she could raise the money so they could do the research. They started their work at the Van Andel Institute.
February 2021, on the anniversary of Milan's death, came the news this family has been waiting for for a decade. Two treatments for DIPG are in their clinical trials after FDA approval.
“It’s huge. It’s big. It’s big. It’s what we started out to do,” Sharyn said.
Sharyn isn't ready to quit just yet.