After Son Battles Brain Cancer, Family Gives Back With 'Cosmic Bowling' Fun-raiser Sunday

RIVERHEAD, NY — It was a nightmare no mother should ever have to endure: Amy Mardjani was eight months' pregnant with her third son when her five-year-old boy, Alec, became ill with what his family initially thought was step throat.

In a terrifying turn, Mardjani's son was diagnosed with brain and spinal cancer.

With the official diagnosis anaplastic medulloblastoma, Alec's family, who lives in Center Moriches, vowed that, rather than giving up, they would pour their hearts and lives into loving him through the darkest of hours.

And now, 10 years later, they are focused upon giving back: On Sunday, the family, including his father Mark and brothers, Kevin, 17, and Sean, 10, will participate in a "Kids Helping Kids: Making a Difference Cosmic Bowling Fun-Raiser."

The event will take place at Wildwood Lanes, located at 3965 Lake Avenue in Riverhead, from 3 p.m. to 5 p.m., with check-in at 2:30 p.m. Along with glow-in-the-dark bowling, the fundraiser will feature music, a Chinese auction, and a 50/50. Tickets cost $20 and include shoe rental, pizza, soda and glow in the dark bowling fun.

Proceeds benefit the Guardian Brain Foundation, which has a mission of improving quality of life for those with brain tumors and injury.

Mardjani reflected on her son's journey. "He's 15 now, and he's been through the ringer."

Alex, she said, is wheelchair bound and lost his vision, he also suffered a stroke and had a hematoma. Treatment included a year at Long Island Jewish Medical Center/Northwell Health.

Now, 10 years after his diagnosis, he's tube fed; treatment has left him with secondary concerns, his mom said.

But rather than give up or give in to despair , she said, his family promised, "This is not the end."

She even began researching alternatives, such as hyperbaric oxygen therapy, where her son sat for three hours in a tube which they called a "space pod." The aim of that therapy was to heal by inhaling oxygen in a chamber, where atmospheric pressure is controlled, she said.

He's considered "stable" now, with an MRI every six months. Recently, Mardjani said, an MRI revealed a growth on the front of his spinal cord; the location makes it too dangerous for a biopsy.

Despite his challenges, her son loves Harry Potter and Star Wars.

"He's amazing," his mother said. "He puts on his boxing gloves and says, 'I'm Rocky,' and we play the song 'Eye of the Tiger.' I look at him, and then, I hear people complain and I think, 'You have no idea how lucky you are.'"

The diagnosis has meant dark days, Mardjani said. "He was robbed of his childhood," she said.

But despite the sadness, she and Alec's family have chosen to focus on the miracle of his survival. "He's happy. He's very happy."

And now, she's decided to give back to the charitable organization that has helped her family during their most challenging times.

The Guardian Brain Foudation, Mardjani said, "is an amazing organization. When Alec was first diagnosed, I didn't even want to go to the supermarket. I didn't want to see anyone, didn't want to answer any questions."

The organization and its members sent care packages and "comforting things," and helped pay for wheelchairs and equipment that insurance didn't cover.

"I've seen them help so many lives. This is just our way of trying to give back to families that are struggling. We've been there. We've been very fortunate. Our mission now is to give back."

For additional information, call 631-335-9889.