GoFundMe Created For Man With Rare Disease: 'At 20, I Will Be Blind'

SAG HARBOR, NY — A young man diagnosed with a rare disease that will leave him blind within months has created a GoFundMe page to help deal with the unknown in the days to come.

Christopher Backlund, 20, who lives in Sag Harbor, spoke with Patch recently about his illness and also, about losing both his grandfather and mother within a painfully short time.

And now he's shared his challenges on the GoFundMe page, "Going Blind Due To Rare Disease."

He was diagnosed with Lebers Hereditary Optic Neuropathy, and is expected to lose his sight within six to 12 months, Backlund 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."

"The nerves in my eyes are dying rapidly. At the moment, I can still drive and do other things, because it has not spread to my left eye yet," Backlund said. "I am no longer able to see out of my right eye, and within six months there's a 90 percent chance it will spread to my left eye."

He added: "At the age of 20 I will be blind. I never thought I would ever being saying those words. Nobody should ever have to say those words."

Backlund said he hopes to undergo experimental gene therapy to treat his disease. "If the treatment fails the only way to prevent the disease from spreading to my left eye is nothing but luck —-something I don't have very much of," he wrote.

He added: "I wouldn't wish this disease on my worst enemy. I'm counting down the days that I will still be able to see and do things that I enjoy. I currently read about three books a week. That's one thing I will no longer be able to do. There will be many things I will no longer be able to do."

Despite the devastating hand he's been dealt, Backlund wrote that he refuses to focus on the negative.

"I don't feel like a victim. Sometimes things just happen. Maybe I'm just in shock and am indeed very upset, but I doubt that. I've never been upset about much of anything in life," he said. "Maybe I'm painfully unaware about the fact that I will be blind soon. I had a dream last night that I would wake up one day and my vision would be restored and that life would go back to normal, but that's all it was— a dream."

To make things even more devastating, his mother Joanne Backlund died suddenly from a heart attack recently and was laid to rest this week.

"She died in my father's arms," Backlund wrote. "I didn't get to say good-bye. I didn't get to say I loved her one more time. I didn't get to say 'thank you,' one last time."

He also lost his grandfather, Mitchell Mezynieski Jr. in February, 2021. His grandfather was a mentor and someone he loved fiercely, and the loss was profound.

"He was my best friend," Backlund said. "Mitchell's passing was heartbreaking. He survived COVID,, severe pneumonia, several infections, etc. He spent six months in a nursing home recovering. He was actually almost fully recovered and ready to come home in a few weeks. I was excited that I would soon be able to see him again. Then, out of nowhere in the early hours of a Wednesday morning we got the news of his passing."

Backlund said he spent time in the cemetery where his grandmother is buried, praying for his grandfather's survival.

"Mitchell was almost like a second father to me. He did a lot for me growing up. We were incredibly close. Mitchell never complained about anything, he was never angry, he was always calm" he said.

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."

"I always wanted to be like him growing up," Backlund said. "I always saw him as a true role model. He was someone I looked up to. . . He didn't deserve to die."

But, Backlund said he finds peace in believing that his grandfather is in a better place now, reunited with his love, his wife Kathleen, who died in 2015, and his own father Mitchell Mezynieski Sr — as well as his beloved dog Woody.

"Mitchell, my one promise to you is that I will not let you down. I will not disappoint you. You always wanted the best for me and I will make sure I do my best," Backlund wrote.

His father Bruce Backlund is "all I have left now, to guide me in life — and he is 68," he wrote. His father, too, is a hero, Backlund said.

"When my mom went blind he took over and did everything for the family. He drove me everywhere I had to go. He went to get groceries. He helped my mom with everything," he wrote. "During the last 12 months that my mother has been sick my father was her primary caretaker and I find that incredibly admirable. When my mom first went blind in 2013 my dad could have simply given up, but he didn't. He dedicated everything to my mother. There are not many people like that," Backlund wrote.

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 told Patch. "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. This is not the end."

However, now there is great financial need, Backlund said. "My father is retired and can't work and I am going blind due to the LHON disease. Everything is frozen until probate is over, and we can't sell any assets — even if we wanted to. I have no money left to pay for eye treatments, food, or oil. All of our funds are stuck in probate. We are preparing for a dark winter ahead."

To donate to the GoFundMe, click here.