HIGHLAND, Utah — A Utah County community is rallying around a boy with a rare form of terminal brain cancer called diffuse intrinsic pontine glioma (DIPG).
Erica and Spencer Shemwell of Highland said their 5-year-old son, Caleb, was diagnosed with DIPG in November.
“No parent ever wants to be told their child has cancer, let alone tell them there’s no chance of survival," said Erica.
They said Caleb likely doesn't have much time left.
“The average prognosis from diagnosis is 8-11 months with treatment," said Erica. "So we’re hoping we’re in that small percent where we get a couple years, but preparing for less."
Families went to Freedom Elementary School on Saturday to celebrate Caleb, and to raise awareness and funds for research on a cure.
“Pediatric brain cancer is the least funded out of all cancers, and we just really don’t want these kids to feel like they don’t have any hope," Erica said. “Every child deserves a chance, not just because it’s rare, right? You would want to give that type of opportunity to every kid.”
Entry was $10 for raffle tickets for activities and games, with all proceeds going toward The Cure Starts Now to fund research for pediatric brain cancer.
Spencer said while it most likely won't benefit Caleb and their family, they hope it will help other families fighting the devastating disease in the future.
"It’s very difficult, you know? What we’re going through as a family is really hard," said Spencer, "But we do know there’s hope out there for a lot of people and we’re hoping that this in some small way will help contribute to cancer research and then hopefully they can find a cure."
Erica said she knows Caleb appreciated the community's support Saturday.
“I know if he was old enough to understand, he would want to give. It’s what he does. He just gives so much love to everybody else. We’re grateful we can be a small part of that," she said.
Donations to The Cure Starts Now cause can be made online here.
