Disease survivor honors others with disease with special Tribute Garden

In his quest to become an Eagle Scout, Nicholas took after a project that his very close to home for him and his parents

Berlin resident Nicolas Pyryt has no memory of fighting the disease as a young child during the first few years of his life, however his parents can always remember what it was like when they finally found out what was causing him so much pain.

At 18 months old, Nicholas was diagnosed with Langerhans cell Histiocytosis, a rare disease for which there is no medical cure. His parents, Robert and Stacy, had noticed he had tremendous pain on the right side of his head around his ear, causing him pain in even the simplest of tasks, such as washing his hair or changing his shirt.

“We were in and out of doctors offices repeatedly, we were told he had ear infections,” said Stacy Pyryt. “The symptoms started getting worse, more like he was screaming at nighttime waking up.”

They eventually took Nicholas to an ENT specialist, and still received the same diagnosis of an ear infection. It was at this time they assumed something larger was bothering him, leading them to ask for a head x-ray.

That x-ray would reveal a large mass on the right side of his head, as well as other smaller masses elsewhere on his body, diagnosing him with LCH.

He was treated for approximately three months with chemotherapy and steroids until the mass dissolved, and he was healthy until it came back two years later, leading to another six-month bout with more chemotherapy and steroids.

Despite the pain and fear for him and his parents in his younger days, Nicholas has been LCH free for 12 years.

Once Nicholas was disease-free the second time, he was able to start living a more normal lifestyle, which for him started with joining the Scouts.

“The day that he could get in there, he joined the cub scouts and now it’s 12 years later,” said Robert Pyryt, who is also an assistant Scoutmaster with Nicholas’ troop.

Nicholas Pyryt with his parents, Robert and Stacy, out front of the Histiocytosis Association building

Nicholas is a member of Boy Scout Troop 132 of Sicklerville and months ago was looking for a project to help him become an Eagle Scout. There were ideas he and his parents had passed around, but once his mom presented the idea of possibly doing something in coordination with or for the Histiocytosis Association in Pitman, it became the main focus.

Through the project, Nicholas and the volunteers were able to create a tribute garden out front of the Histiocytosis Association building, extending the mulch and flowers farther down the yard and creating a walkway with a commemorative plaque for all those who have fought or are still fighting the disease.

“I think it was close to 200 man hours of working and it was a lot of planning,” said Robert. “It took a couple months; we were here two weekends working on it but to get everything ready to that point took a couple months. Once everyone came here and helped out, it went smoothly.”

When Histiocytosis Association President and CEO Jeffrey Toughill was contacted by Nicholas and his parents about the potential of the idea, the planning went pretty smoothly. The family drew up a proposed design for what the tribute garden would look like after first meeting with Toughill around the beginning of June.

Both the association and the Pyryt family said they were thankful for the time the volunteers spent on the project, as well as donations they were able to receive from companies and residents around South Jersey for making the garden possible while also costing the association nothing. The tribute garden was made possible with generous donations from The Home Depot and Dambly’s Garden Center in Berlin.

The plaque out front serves as a visible reminder for both the town and all who come to the association.