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.

‘The geneticist who’s been doing this for 40 years had never heard of the condition when she told us that Eli has it.’

Port Washington

“Eli was born in April 2019 and at first everything seemed normal. Shortly thereafter, we just sensed that something didn’t feel right. Doctors said it’s colic or he’ll outgrow this. On July 4th, 2019, I took him to the hospital and said, ‘I don’t know what’s wrong with him, but there’s something wrong.’ He stopped eating, he was screaming all day and night…I didn’t know what else to do. One specialist said we should do a brain MRI and the finding was that there was abnormal development in the front of the brain. That led us to do a genetic test and a couple of months later we had the diagnosis of FOXG1 syndrome, a brain disorder that causes an abnormal amount of the FOXG1 protein to be developed.

I remember asking her, ‘Is there any hope that there could be a treatment?’ She basically said, ‘I’m sorry, but there is no hope.’ Through the tears, we knew immediately we were not going to accept that fate.

“In Eli’s case, he only has approximately half of this protein that is really critical for cognition. The disorder is marked by an inability for most patients to walk, talk, feed themselves, to basically do anything independently. Literally everything is impacted. The geneticist who’s been doing this for 40 years had never heard of the condition when she told us that Eli has it. We learned that, at the time, there were less than 700 patients in the world that are known. I remember asking her, ‘Is there any hope that there could be a treatment?’ She basically said, ‘I’m sorry, but there is no hope.’ Through the tears, we knew immediately we were not going to accept that fate.

“So, we started a foundation focused on bringing a therapy to the clinic. We made it our mission to recruit the top scientists to help us come up with ways we could solve this problem. Our preliminary data is showing that this condition may be reversible if we get to the children early enough while the brain is still developing. This is very much a Long Island story for us because so many of our friends and family right here, in the place that we both grew up, have been in the arena with us. We are grateful to have a community of people who have made this cause their own. At the same time, we still have a lot of work to do. The path to the clinic has been very challenging — but we are not going to give up. And since time is of the essence, we don’t have the luxury of walking. We have to run.”

‘I know there are people like me who are incredibly talented but not working and that’s not right, so I decided to do something about it.’

Port Washington

“I am a very specific type. Because of who I am and what I look like, there’s not much out there. The last theater gig I got was the Off-Broadway lab of ‘Fat Camp.’ I know there are people like me who are incredibly talented but not working and that’s not right, so I decided to do something about it. “My mentor, Broadway’s Steve Rosen, taught me that you need to create your own opportunities, so I came up with a comedic theatrical trio called ‘The Heavyweights.’ I wanted to create a show that truly features people that look like me, so ‘The Heavyweights’ helps to answer the questions: Why can’t the Phantom be 350 pounds? Why is the fat guy always the butt of the joke and he can’t get the girl? Why do the fat guys never have motor skills in a musical?

“We’re capable of having emotion and doing everything everyone else can. The ‘Heavyweights’ did ‘Little Shop of Horrors,’ which consisted of me and two other guys that look like me literally doing every role in the show. We all played Audrey, we all played Seymour. It was incredible.

Until the world is okay with someone who has a little more bone on their body being the star, it is what it is. I’m going to continue to enjoy doing The ‘Heavyweights’ and voiceovers because it doesn’t matter what you look like.

“Because I don’t look a certain way, I know that I must put in the work. My voiceover work started when I would make sounds and weird noises as a kid. I was an only child and I had to keep myself entertained. The first big voiceover work for me was the giggle of the Pillsbury Doughboy for two years. I also originated a character on Nick Jr.’s ‘Nella the Princess Knight.’ As a way to distract myself during the quarantine I would make silly videos on TikTok as @theejeremygeller, and I randomly had 31,000 followers.

“I realized that people are laughing at my stupid humor. Without creativity in the world, artists have to have an outlet somewhere. Making people laugh is a consolation for me! That’s me. I’m realistic in knowing who I am and I’m not trying to change for anyone. I was given great advice: ‘If you want to change, change for yourself. Only do it for you.’ I like who I am. I don’t want to be a crunchy leading man.

“Until the world is okay with someone who has a little more bone on their body being the star, it is what it is. I’m going to continue to enjoy doing The ‘Heavyweights’ and voiceovers because it doesn’t matter what you look like.”