Niagara Falls Boy Battles Rare Cancer As Community Leaders Step Up To Help

by Mike Hudson

“Baby Shawn” Kennedy is a happy 5-year-old boy with a big problem. He is full of life and always smiling, but has been diagnosed with a rare form of brain cancer, Diffuse Intrinsic Pontine Glioma (DIPG), a very aggressive cancer located on his brain stem.

This tumor is not operable, and the survival rate for those stricken with the disease is zero.

Last August, Nicole Vathy, Shawn’s mother, noticed what she called ‘night twitches,’ and told her son’s doctor. Soon tests were completed and Shawn was diagnosed.

Niagara Falls City Councilman Ezra Scott has taken a personal interest in Baby Shawn’s plight.

“I’ve known Shawn Kennedy almost since before he was born,” Scott said. 

Scott, a Community Liaison Director with Roswell Park, had long worked as a volunteer with children here.

“I did a lot of work with kids in the neighborhood, and I came to know Shawn, his brothers and sisters, and his mother, Nicole.”

Scott is currently working behind the scenes with other city officials to create a series of September events that will highlight the problems posed by pediatric cancer.

“I think we just need to focus attention on this,” Scott said. “Niagara Falls can really take a leadership role here and Shawn and Nicole will be great representatives.”

Baby Shawn is being treated at St. Jude Children’s Research Hospital in Memphis, TN, and the costs associated with treatment and travel have put a strain on the family, his mother and six siblings. He has just reached his six months post diagnosis, which is monumental as DIPG patients are given a survival span of six months to a year after diagnosis. Again this week, Shawn’s mother had to leave her other children behind in New York, which makes life chaotic and stressful for the family.

An online fundraising drive, at https://www.gofundme.com/2ueywcvw,  has been successful in raising over $5,000 of an announced $25,000 goal, and local fundraisers have helped out as well.

“He never got into toys or cartoons, it’s always been basketball,” Nicole Vathy said. “And the support from the community, I think it’s beautiful.”

Recently, Baby Shawn was able to spend an evening with the Golden State Warriors and his hero, reigning NBA MVP, Stephen Curry. He sat with the team during warm-ups and then afterward got to spend some one-on-one time with Curry.

The NBA star signed and gave Shawn his sneakers and invited him and his brother into the locker room before a game against the Miami Heat.

“You know, if that can find a cure for pediatric cancer, it’s going to be the cure for all types of cancer,” Scott said. “And we really just need to put the children first for once.”