BUFFALO, N.Y. (WIVB) – The community has been rallying around a little boy from Niagara Falls who’s been fighting a rare and aggressive form of brain cancer.
On Tuesday, Shawn Kennedy, a.k.a Baby Shawn celebrated his sixth birthday. It’s a milestone doctors weren’t sure he’d make. When he was diagnosed with DIPG or diffuse pontine intrinsic glioma, they only gave him only six to nine months to live.
“It was a year, August 13. We surpassed our year, “ Nicole Vathy, Baby Shawn’s mother explained. She said it feels great to have reached this milestone. “But it’s scary at the same time because I don’t know what tomorrow brings us.”
Kennedy also started kindergarten this year. “It feels amazing. It really does. He loves going to school,” Vathy said.
Kennedy’s milestone has also shined a light on the need for more breakthroughs in pediatric cancer.
Doctors say they need more treatments.
Right now, depending on the type of cancer, doctors can treat a patient with surgery, chemotherapy, radiation, immunotherapy, and/or a stem cell transplant. However, more needs to be done, because some cancers can only be treated with some of those options.
Dr. Sarita Sastry, the National Director of Research and Programs at CureSearch for Children’s Cancer said fewer treatment options have been brought to the market for children, than adults.
After the research phase, many of the treatments don’t make it to the clinical trial phase or to market, said Dr. Sastry. “We refer to it as the valley of death. Where promising research falls off the cliff, basically without being propped up by proper support and funding to drive it.”
Pediatric cancer makes up one percent of the overall cancer diagnoses. As a result, doctors say it’s often risky for companies to develop a treatment.
“So it’s not profitable for them to invest in drug development just for a small population. That is one of the major hurdles in getting these treatments widely available,” Dr. Sastry said.
That’s why Mike Esposito and Baby Shawn met with NFL Commissioner Roger Goodell over the summer. They want one weekend of the NFL season to be dedicated to pediatric cancer. It’s one weekend, that could make a huge difference.
“Anything to get awareness out. It makes people wonder because it is so underfunded,” Vathy said.
In honor of Baby Shawn’s birthday, Vathy plans on holding a birthday party for him over the weekend.
Vathy said the support from the community during this difficult time has meant so much to her.