Annual Charity Hockey Game To Help Family
For Sarah Palumbo and her family, word that a charity hockey game made up of area first responders would be raising funds for her 8-month-old son diagnosed with a rare genetic muscle disorder was a “breath of fresh air” in their lives.
Community Through Hockey, consisting of a group of police officers, firefighters and corrections officers, will take part in a friendly game at 7 p.m. Saturday, Oct. 2, at Northwest Arena in Jamestown. The event is free to attend, and all money raised through a 50/50 drawing and basket giveaway will go toward Waylon’s Warriors, established by the Palumbo family for her son who has Nemaline Myopathy.
Palumbo said Waylon’s Warriors is meant to help raise awareness for the rare disorder. Nemaline Myopathy is defined by muscle weakness and the presence of fine, thread-like or rod-like structures called “nemaline bodies” and is found in roughly 1 in 50,000 live births, according to the National Organization for Rare Disorders.
“The doctors don’t know what the outcome will be for Waylon,” said Palumbo, born and raised in Falconer and now living in Lewiston. “It’s affects his swallowing and he has to have a G-Tube put in. … It does affect his muscle tone, so we’re not 100% sure if he’ll be able to walk.”
Due to the rarity of the disorder, there have been several unknowns for Palumbo and her husband, Justin, regarding their son.
“I think in the beginning it was a little bit harder then it is now,” she said. “We’re trying to take it one day at a time and let him lead us. He’s extremely resilient and determined, and that’s helped us hold it together.”
Palumbo was contacted recently by Eric Herman, a member of the Jamestown Fire Department and founder and president of Community Through Hockey. She said Herman is a friend of the family and was honored the charity game would raise money for Waylon’s Warriors.
“With (Waylon’s) diagnosis, I had to quit my job and be a stay-at-home mom,” said Palumbo, who noted that her son’s care requires several doctors and appointments. She said her husband was recently injured on the job, which has put further strain on their income.
“The medical bills do add up quite a bit,” she said. “To see the community pull together it’s been a blessing. I cry all the time.”
Herman said choosing Waylon’s Warriors was an easy one this year. “Waylon had recently been diagnosed with Nemaline Myopathy and not a lot is known about this disease, so we decided to help them with expenses and hopefully raise some awareness in the process,” he told The Post-Journal. “Our goal is help families in Western New York.”
Community Through Hockey began as a group of first responders who like to play hockey; the idea to raise money for different causes came about in 2015 when the first game raised money for Kallie’s Krusade. Herman described their first charitable act as a “spur of the moment” decision.
“In the five years that we have been able to have our game, the community has helped raised over $31,000 for families and organizations in need,” he said. “We’ve been able to help send a family to Disney, cover medical and travel expenses and provide support to programs that help individuals with and without disabilities.”
“It is extremely import that we continue to hold fundraisers when we can,” he added. “One never knows when we might need some assistance in our lives. I am grateful for what I have in my life and feel blessed to be able to give back. Playing hockey and connecting our professions with the community are a plus.”
Palumbo said she or her husband plan to be in Jamestown for the charity hockey game.