LI Man, 20, Going Blind From Rare Disease: 'This Is Not The End'

SAG HARBOR, NY — Christopher Backlund didn't think things could become more painful.

Backlund, 20, who lives in Sag Harbor, lost his grandfather, Mitchell Mezynieski Jr. in February, 2021. His grandfather was a mentor and someone he loved fiercely, and the loss was profound. Then, in July of this year, he was diagnosed with a rare genetic disease — one that his mother also had — that is expected to leave him blind within months.

And now, this week, his mother died suddenly. He never had a chance to say goodbye.

Backlund spoke with Patch about the dark days he's endured, and about how he's found the strength to forge a way forward.

He's been honest on social media about his struggles.

"I am unsure where the road ahead lies. I am 20 and I've lost both my grandfather and my mother in a year and a half. My father is 68. He can't give up. He's all I have now as someone to guide me through life," Backlund wrote this week. "To make things worse, I was diagnosed with the same disease my mother had six weeks ago. I will be blind within six months."

Despite the incredibly painful series of tragedies, Backlund's indomitable spirit shines through.

"I will push forward," he said. "This is not the end. Sometimes people say my life story is tragic, but I don't think that way. I never have."

Backlund described the enduring bond he shared with his grandfather.

"I was incredibly close with my grandfather," he said. "At the age of 14. I moved in with him, to take care of him, mainly because my grandfather was always there for me."

His grandfather was well-respected in the community, serving as a chief in the Bridgehampton Fire Department, a member of the National Guard and the Army.

"My grandfather was a farmer, a builder, an architect, a mechanic and so much more," he said. "His passing was devastating to not only me, but to my entire family."

His grandfather owned a construction business and retired in 2011, Backlund said.

"He grew up in Sagaponac and lived his entire life there before moving to his farmhouse in Sag Harbor, which has been in our family for 150 years. He was deeply loved by the community. Everyone knew him. Everyone respected him — and everyone loved him."

Losing his grandfather dramatically changed Backlund's life; he'd lived with him for five years before he died.

"My grandfather was an incredible man. Anything you ever needed, he would help you with. If you ever needed help with any sort of mechanical issue, he could help you. If you ever needed help with any sort of financial issue, he would help you," he said.

His grandfather, he said, was very generous, helping those in need and donating to charities.

"Even speaking about my grandfather now is very difficult. Writing about him is very difficult. He was always there for me, ever since I was a little boy. I remember when my grandfather would build houses in Sagaponac. I would always be there with him, ever since I was 5 years old, up until the point where he retired in 2011. I learned a lot about construction during that time. My grandfather is probably the nicest person I ever met in my life, and was probably my best friend in a lot of ways. I go down to the Wainscott cemetery, where he was buried, at least twice a week."

Learning he would soon lose his vision this year was an unfathomable blow to a young man with his whole life before him. He was diagnosed with Lebers Hereditary Optic Neuropathy, which causes vision loss and often presents in young males, just a few months ago, he said.

According to information provided by MedicinePlus.gov: "Vision loss results from the death of cells in the nerve that relays visual information from the eyes to the brain (the optic nerve). Although central vision gradually improves in a small percentage of cases, in most cases the vision loss is profound and permanent."

"I'm still kind of in shock. I don't really believe it, and I'm not really even emotional about it, because I'm in shock," Backlund said.

In December 2021 he noticed his vision getting worse, but said that it really wasn't that bad.

"I just assumed I needed a new prescription for my glasses and I thought nothing of it," he said. "It's slowly proceeded to get worse and worse, but it was only in one eye at first. Eventually, it got so bad that I could barely see anything out of my right eye."

Backlund went to the emergency room. The doctor couldn't immediately determine the problem, largely, Backlund said, because the disease is rare, affecting just 1 in 50,000, according to the Cleveland Clinic.

"In six months I will be blind completely," Backlund said. "Fortunately, there are experimental treatments. However, the FDA hasn't approved me yet to be someone who can get the experimental treatment."

Backlund said he's garnered a great deal of support from both local attorney Adam Grossman and Rep. Lee Zeldin, both of whom are advocating for him to be approved for the experimental treatment authorized by the U.S. FDA.

Although there was a promising clinical trial at Vanderbilt University, that trial has ended. However, researchers are hopeful about gene therapy in treating LHON, a report by Vanderbilt University Medical Center said.

With possibly only months left before he loses his vision forever, Backlund feels an urgency to do the things that have long given his life meaning.

"I used to take flight lessons at the East Hampton Airport," he said. He was forced to give that up, due to financial constraints, but it's something that had always been a dream.

"I'd maybe like to continue flying, maybe with the pilot himself doing it and me just observing. I really like aviation."

Like so many young adults, Backlund had believed the future was infinite with possibility. Now, he's forced to see some opportunities curtailed.

"There are a lot of things I wanted to do — and it's going to be very, very difficult to do those things soon," he said.

Just 20, having faced so much in such a short time, Backlund was devastated this week when his mother Joanne Backlund died suddenly, an unthinkable loss.

"I've kind of become emotionally numb at this point. Ever since my grandfather passed away, things have gone from bad to worse. Less than six months after my grandfather died, my mother was hospitalized for renal failure. She spent 10 months in the hospital bed. Unable to walk, unable to eat food — she was living on a liquid diet around three months ago."

Her death was unexpected, he said, because it came after signs of hope.

"She'd actually begun to make a really good recovery. She was starting to eat food again. She was starting to relearn how to walk, and she was starting to relearn how to enjoy life," he said. "My parents had plans to move to Pennsylvania and my mother was excited to go. She was ready to start a new life. A better life, hopefully — and the most unfortunate thing is she won't be able to experience that."

Despite facing staggering losses and uncertainty, Backlund has held tightly to his dreams for the future.

"I wanted to pursue politics, mainly because of my family's political history on the East End," he said.

His great-great-grandfather Clothier Vaughn was an important political figure in Sag Harbor, a deputy sheriff in Suffolk County, a fire chief and served as U.S. Collector of Customs for Sag Harbor, he said.

His portrait currently hangs in the Sag Harbor Whaling & Historical Museum, Backlund said. His great-grandfather Mitchell Mezynieski Sr. also served as an East Hampton Town trustee and his father Bruce Backlund was the chief dispatcher for the East Hampton Village Police Department for about 30 years; he retired in 2001, Backlund said.

Backlund said he is grateful to still have his father and sister Emily Backlund by his side.

And his dreams are still burning brightly, despite the challenges: "Before this whole thing with my vision happened, I had plans on running for Southampton Town trustee again in 2023. However, if I cannot get the experimental treatment before the filing deadline which is in March, 2023, I might not run. It all depends on how quickly I lose my vision."

Losing his mother has left him bereft. "My mother died suddenly. She was sitting on the couch, watching TV, and out of nowhere, she let out a gasp. She collapsed. Her heart had stopped. My father tried to do CPR, but by the time the paramedics arrived, it was too late. My mother died in my father's arms, right in front of my sister. That memory will stay in my mind for the rest of my life."

The past 18 months have taught the 20-year-old lifetime lessons in resiliency, in relying upon inner conviction and strength to move forward.

"Nobody who ever achieved anything in life ever had an easy life," Backlund said. "Following your convictions means you must be willing to suffer the most. Nobody whoever lived a normal life ever became successful. You never give up, ever — because that is the worst thing to do. It's not what my mother would have wanted me to do. It's not what my grandfather would have wanted me to do. It's not what anyone wants me to do."

He added: "If I gave up now, I'd be disappointing everyone. Not only in my family but in Sag Harbor as a whole. I will never give in — and I will never give up. I firmly believe the best is yet to come."

And, to the community who has opened its arms to embrace him during his darkest hours, Backlund has only thanks.

"So many people have reached out to me," he said. "I am incredibly grateful for the community's support."