By: Samantha Leader
Energetic and filled with energy from the day she was born, Sophie was said to be an inspiration to everyone who met her. In February 2011 at the age of seven, Sophie was diagnosed with ganglioglioma also known as glioblastoma multiforme, and is the most aggressive cancer that begins within the brain. According to National Brain Tumor Society, brain tumors come in two forms, benign and malignant. It is estimated that over 688,000 people in the U.S. are living with a primary brain or Central nervous system diagnosis and that 138,000 are malignant.
The diagnosis led her and her family on a journey they never expected. There were rounds of chemotherapy and radiation, which gave Sophie the chance to live life to the fullest. For an extra year, Sophie was surrounded by the people closest to her. A few weeks before her 9th birthday, Sophie passed away at her home in Syracuse, New York.
“When you lose a child your biggest fear is people forgetting who she was,” Jenee Kawejsza, Sophie’s mother said. People didn’t get a chance to meet Sophie, or she didn’t grow up to be someone, so honoring her name is even more important so people may see who Sophie was.
Nine months after Sophie’s passing, her parents had the idea to turn Sophie’s life journey into a nonprofit organization to help research this type of cancer. Their family all played hockey and loved being on the ice, which gave the parents an idea of a skating fundraiser.
In October 2013 the first event, Sophie’s Skat-A-Thon, was held at Shove Park in Camillus. Putting posters in local businesses, Facebook, and word of mouth promoted the event. By the most-recent Skat-A-Thon they could get billboards up on 81, Township five, and West Genesee School.
The first Skat-a-Thon raised $11,000 which all went to the Pediatric Brain Tumor Foundation. “We had a lot of people ask us if any of the money was staying local, and if we would continue this next year,” Kawejsza said. This gave the parents the idea to give back the money locally but differently from what other nonprofit organizations do.
“Our family was lucky because I worked in the medical field and could understand the types of tests she needed, different medications, questions to ask, and machines that she needed to go in,” said Kawejsza.
Brainstorming through multiple ideas led them to create a resource binder for parents with children who are diagnosed with a brain tumor. According to Kawejsza, they wanted to make something that was not overwhelming, but guide them and store their information while traveling.
The resource binder includes many things such as the dates of their MRIs, scheduled doctor visits, websites with accurate information, questions for the doctors, restaurants, banks, and hotels.
If you have to go through this type of life-changing event, it is beneficial to have close family and friends helping. While Sophie was in the hospital, their family was lucky enough to have the help from hockey friends, work friends and family. Unfortunately other people in this situation may not have the same help.
“One of the things that came up that we worried about was paying for parking, its $15 a day, if they’re there ten days that could be an electric bill for the month,” Kawejsza said.
Donations received are also used to pay for parking while families are at the hospital, to help pay rent and bills for families in need that are falling behind.
According to Kawejsza, she got together with the child life worker and social workers to find out what families were in need of. This led them to making toiletry bags, which is their biggest donation. The bags would allow parents who are traveling to the hospital unexpectedly to have shampoo, toothpaste, toothbrushes, and soap.
“We want families to worry about their kids and not have to worry as much about the other stuff, that’s one of the biggest things because we had that,” Kawejsza explained.
The Skat-a-Thon has gone on for four years now, this last year being the most successful event yet. The tickets for the event are five dollars, with raffles, face painting, henna tattoos, food, and clothing.
“This past year we could get a lot more sponsors prior to the event, leading into it we had made almost as much as 2015 just from our sponsorship money,” Kawejsza said.
Volunteers help with the events every year, putting the bags together, handing out the dinners, and running the activities inside of the Skat-a-Thon. The three people behind Sophie’s giving tree are Jenee Kawejsza, Sophie’s mom, Rob Kawejsza, Sophie’s dad, and Kim Vandemark, Sophie’s best friend Morgan’s mom.
Each year gets easier because they are aware of what they need to do differently and prepare for the next year, according to Kawejsza.
“Our main goal every year is to raise as much money as we can so we can help as many people as we can,” Kawejsza said. Learn more or to donate visit www.sophiesgivingtree.org