One boy’s cancer rallies small-town USA

Sammy (left) is still in a constant battle with Stage 4 High-Risk Neuroblastoma, but his condition has stabled.

 

On July 30, 2012, the Nahorny family’s life came to a screeching halt. The diagnosis of their four-year-old son, Sammy, was Stage 4 High-Risk Neuroblastoma with metastasis to the bones, bone marrow and lymph nodes.

“Cancer wasn’t on our radar,” Sammy’s mother, Erin Nahorny, said. “As a mother, I was completely shocked, devastated and terrified.”

Neuroblastoma is a rare cancer that mostly appears in children. It accounts for around 7 to 10 percent of all childhood cancer.

Two days later, Sammy was in surgery to have as much of the tumor removed as possible and he would have to go through chemotherapy until December 2012. The severity of the disease made Sammy unable to attend school and forced Erin to leave a job she loved.

“Going through this process with Sam and having to travel all over the country for treatment was difficult,” Erin said. “The one bright spot through it all was you get to see the best in people. Everyone should get to have the experience we had in getting to see what people are capable of.”

Sammy went through chemotherapy; he was losing his hair and energy, but the happy and funny Sammy never left.

“He’s a lot stronger than I am,” family friend Amy Williams said. “The pokes, needles and that stuff he’s endured. He’s just a brave kid.”

“Sammy has always had the best attitude,” Erin said. “The kids that we have met that go through these things are special. They have this wisdom that is beyond their years, an unshakeable spirit and they are both happy and joyful.”

Although in the summer of 2015, they had a decision to make, continue the treatment or stop the needles, drugs and the pokes and let nature take its course.

The birth of Sammy Superheroes

That’s when three of Nahorny’s friends, Mary Sueper, Amy Williams and Kim Brandenburg got together to come up with a design for a shirt to sell in support of Sammy.

“My son was wearing a Superman shirt that he had,” Williams said. “We just said Sammy Superheroes, that’s it and we started selling T-shirts the next day.”

They sold the T-shirts in Williams’ garage. The idea was to raise a couple hundred dollars, but they exceeded that goal within hours.

“In the first week, we had $10,000,” Williams said. “The next week, Columbus High School had a Blue-out game for the Nahorny’s, and then Scotus did something similar, then Lakeview High School did.”

 

96% of new cancer drugs over the last five years have been for adults. There has only been one drug for kids in the last 20 years.

Three weeks later Williams, Sueper and Brandenburg raised over $20,000 and presented it to the Nahorny’s. The Nahorny’s said, “No, we need to start a foundation to help others.”

“Columbus is such a special community,” Nahorny said. “When it comes to fundraising here, people get on board. They are so willing to get behind a cause and do something bigger than themselves.”

Sammy spirit drives conversation of child cancer

  The last treatment for Sammy took place in Seattle in the summer of 2015. He was among the first children to have a T-cell treatment, which involves taking a patient’s own immune cells – specifically, white blood cells called T-cells – and reprogramming them to attack tumors.

“The disease had already progressed. There wasn’t some great option at there, we’ll just stop treatment for a while,” Nahorny said. “No one could tell us why, years later, Sam has stabilized from that time.”

Stabilized is a big step for Sammy. While there is no cure for neuroblastoma, if you’re stabilized, you can attend school, grow hair and play.

Now, it would be hard to tell that happy Sammy is still facing the struggles of cancer. He’s a regular, hyper, excited and goofy kid, who enjoys family time and his iPad. He loves to swim, go to movies and play baseball. During our time together, he kept sarcastically answering ‘iPad’ to everything and while giggling. While some people may interpret this differently, the humor he continues to carry is astounding.

He also has a full head of hair and it wasn’t long ago when he was losing his hair to chemotherapy. His spirit, positivity and courage go beyond in inspiring his mother and the entire Columbus community. This is an organization that drives change to a topic that people feel more comfortable saying ‘thoughts and prayers’ than actually talking about for taking action on it.

$500,000 since the start 

Jeremy Stanislav is the executive director of the Sammy Superheroes Foundation and has taken on an active role of setting up some of the bigger events that the foundation puts on. Most recently, they were a part of the Brian Duensing Superhero Gala that took place on Nov. 17 of this year. Stanislav was blown away by the results.

The final numbers aren’t in yet, but we think it’s around $120,000,” Stanislav said. “We are obviously thrilled about that and we can’t thank Brian (Duensing) and all the volunteers enough.”

This means more to Stanislav than just helping out a ‘cute little bald kid,’ and he says he has found ‘new meaning’ with this position.

“I felt like there was something missing,” Stanislav said. “This job has me feeling like OK, I’m making a difference in the world and that’s what I want to do. I want to do this job because I want to help these kids before it damages their development skills.”

The Sammy Superheroes foundation has raised over $500,000 in its existence, but Stanislav, Williams and Nahorny agree that reaching $1 million next year is possible. Within the next 3-5 years, Stanislav says that it’s his goal to be giving millions away.

The money donated has to pass through a checklist the Nahorny’s have created. They want to know where the money goes if it all goes into funding child cancer research and more. Some of the main places they have donated include, The University of Chicago, Mayo Clinic and other hospitals where Sammy has had treatment.

This won’t be over until kids won’t be diagnosed with cancer,” Nahorny said. “They don’t have a voice, so we need to be their voice with awareness. With awareness comes the donations and with the donations comes funding and with funding comes cures.”

The bravery of one family has rallied a town behind something greater than itself. The Nahorny’s have attended more funerals than most people do in their lifetime. This continues to inspire Erin, Sammy and the Sammy Superheroes Foundation to cure childhood cancer and save families from having to go through what they have.

 

 

*Timeline photos and feature photo courtesy of Erin Nahorny*

 

 

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