Bowling benefit in Fountain Valley helps family remember a rare man with a rare disease

By GREG MELLEN | | Orange County Register

PUBLISHED: September 19, 2017 at 3:38 pm | UPDATED: September 19, 2017 at 11:16 pm

To his family, Matt Cwiertny was one in a million, and it was a one-in-a-million disease that took down the 24-year-old in October 2009.

From the day the 22-year-old graphic artist walked into an emergency room with a common case of mononucleosis, to his death two years later from an extremely rare immune disorder, complicated by an also rare blood cancer,  Cwiertny became a symbol to his family of ineffable optimism in the face of adversity.

Creating a legacy for him became their cause.

In seven years, the fledgling Matt Cwiertny Memorial Foundation, which is basically a family-created nonprofit, has raised about $200,000 for cancer research.

On Saturday, Sept. 23, the group plays host to its main fundraiser – the seventh annual Bowl-A-Rama – taking over 30 to 50 lanes at Fountain Bowl. The event includes three hours of bowling, pizza and soda for each lane.

Since Cwiertny died, his family has taken up the fight to not only battle the rare diseases but raise awareness and advocate for what they say is an often overlooked group: adolescent and young adult cancer victims, according to Tony Cwiertny, Matt’s father.

“In the seven or eight months after Matt died, we became aware of the plight of adolescent-young adults. We didn’t know any of that,” Cwiertny said.

Helping that age group became the rallying point for the Cwiertnys.

“Three times as much money is spent on research for children zero to 15,” said Tony Cwiertny, a Westminster resident. “And there has been no change in survivability for adolescents and young adults.”

Certainly not when compared to other age groups. While some improvement has been seen in the adolescent-young adult population, a recent report by “The Lancet Oncology” journal shows that adolescent-young adults have “a lower chance of surviving eight relatively common types of cancer than children,” according to a long-running study across Europe.

Matt Cwiertny’s story was common enough when the Westminster resident walked into the emergency room feeling rundown from mononucleosis. He had been exposed to Epstein-Barr Virus, one of the most common strains in the herpes family. About 90 percent of adults in the U.S. are exposed at some time in their lives, often with no symptoms, according to the National Association of Infectious Diseases.

There was nothing normal about what happened next, however. Cwiertny was among a very rare group of people with an immune system disorder called hemophagocytic lymphohistiocytosis, or HLH. When exposed to the Epstein-Barr Virus, his immune system essentially went haywire, releasing a massive amount of body defense cells.

“These cells not only destroy the damaged cells, but they do not “shut off” as they should and go on to destroy other cells such as red blood cells, platelets, and neutrophils within the body,” according to the HLH Center at Cincinnati Children’s.

As Cwiertny’s condition deteriorated, his doctors were confounded for more than six months. It wasn’t until he suffered a nearly fatal respiratory arrest that the nature of the disease was discovered.

“It took a young doctor who had been at a conference to make the correct diagnosis,” Tony Cwiertny said.

The HLH triggered non-Hodgkin’s Natural Killer (NK) T-cell lymphoma, another very rare blood cancer. Matt Cwiertny would go through 13 rounds of chemotherapy, a bone marrow transplant and radiation before he died.

One thing that kept his spirits up through the ordeal was music.

“In adolescent-young adults, it’s been found music is a good treatment,” Tony Cwiertny said. “It keeps them going mentally.”

To that end, one of the projects of the foundation was to pass out iPod Nanos preloaded with music called “Matt’s Mixed Tapes” to adolescent-young adult patients. Since the tapering of the popularity of the iPods, Tony Cwiertny says his group is working on a deal for gift cards with the Spotify digital music service.

The mission of the Cwiertny family remains to do what they can to prevent more stories like those of Matt.

“What we really learned is these people need help,” Tony Cwiertny said. “These patients are in great need and nobody knows about it.”