Faces of Long Island celebrates the uniqueness of everyday Long Islanders. In their own words, they tell us about their life experiences, challenges and triumphs. Newsday launched this social media journey into the human experience to shine a light on the diverse people of this wonderful place we call home.

‘We’re going through tough times right now with his medical issues but it’s all worth it, this journey.’

Riverhead

“I have a charming, charismatic, understanding special needs son. He has a rare genetic disorder called Koolen-de Vries syndrome and it went undiagnosed for 19 years. He has developmental delays and learning disabilities. “He’s 28 now and Dr. Gail Schonfeld saved his life. He was getting sick and had liver disease. I tried to get him on a liver transplant list.

“We went to a few institutions; they just wouldn’t allow it. They took points off for him being special needs. I had actually given up; I had hospice and thought he was going to pass away. Our pediatrician wouldn’t sign off on hospice papers, and I was at my wits’ end and hospice had to stop coming. I left my house and I stormed to her office in East Hampton and banged on her door. She said to me, ‘Of all my patients’ parents, you’re giving up? Go get tested yourself.’

I was a match; I had to lose 40 pounds and saved his life. I donated 65 percent of my liver on Jan. 28, 2020. We were the last transplant duo before the unit closed for COVID-19.

“We went to Mt. Sinai Hospital. I was a match; I had to lose 40 pounds and saved his life. I donated 65 percent of my liver on Jan. 28, 2020. We were the last transplant duo before the unit closed for COVID-19. We’re doing okay, he has some issues but we’re a year-and-a-half out. I did fantastic. I had no complications. He had biliary duct issues; it’s a common thing that happens with the transplant. He gets sick with infections. We’re trying to save our kids. No one knows about it, no one understands it.

“I belong to support groups for Koolen-de Vries and I’ve encountered people who I’m sure they have it but there are only a few on Long Island who are diagnosed with it. There are only a few tens of thousands diagnosed in the world, and many are undiagnosed. It was fortunate with his liver that I was a match. We’re going through tough times right now with his medical issues but it’s all worth it, this journey. If something happens to my son, I set up with Mt. Sinai to donate all his organs, sending brain cell tissues for Koolen-de Vries research.”

Interviewed by Rachel O’Brien – Morano

Copyright ©2021 Newsday. All rights reserved.

Faces of Long Island is produced by Newsday Consumer Marketing. This content does not involve the reporting and editing staff of Newsday’s Editorial Department.