Sag Harbor Man Going Blind At 20 Forced To Sell Historic Family Home

SAG HARBOR, NY — Christopher Backlund is just 20 years old and in the last year, has had his life overturned in every way possible.

Backlund, who is rapidly losing his eyesight due to a rare genetic disease, has also had to endure the passing of his grandfather and his mother — and now, has been forced by dire economic necessity to sell his Sag Harbor home, which he recently inherited and that has been in his family for 160 years.

"It's a shame to see it go after 160 years, but it had to be done," he told Patch. "It was logistically impossible to keep it, especially with my mother's death and the fact that I am now blind due to the disease."

The progress of his disease has been ruthless. In October, Backlund was told that he could be blind in 30 days.

"I can no longer read or write at all," he said this week. "Even if I put my phone right up to my face, I can no longer read text. I have to use a screen reader now and if I ever want to type I have to use text to speech."

For a man on the cusp of everything to come, Backlund saw his future forever altered.

"Life is completely different than it was six months ago," he said. "My entire life has changed dramatically. Everything that I've called 'life' for the last 20 years is now different. I can't even see the first line on the eye chart now."

Because he still has peripheral vision, Backlund can still navigate without using a blind stick, but cannot read or write.

"I cannot recognize faces. I cannot drive. I cannot do much of anything I normally could do in the past," he said.

Having borne the weight of so much loss in recent months, it was difficult to make the decision to part with the family homestead, where each room conjures images of times gone by.

"Memories I have of the house include living there with my grandfather for the last five years," Backlund said. "It was a really good experience to be able to live with him and I learned a lot. The house will be missed. However, the more I think about it, my ancestors, and my mother, would want me to get the money so I could have medical attention that I desperately need at the moment."

In order to read now he has to use a magnifier, he said. "The one that I use is the same one that my mother used because she also had the same disease," he said.

Because he must use the speech to text option now, and voice recognition software, people often misread or misunderstand what he is trying to say. "This is one thing that's been incredibly difficult for me. It's also been kind of difficult to communicate with people since I can no longer see their faces. However, after a while, I've begun to get used to it," he said.

The two-family historic 1800s home, listed with Signature Premier Properties, has original lead windows and original floors and doors, is selling for $3.5 million. The home includes five bedrooms, a dining room, a pantry, two kitchens, a walk-in closet and walk-up attic and three acres of cleared, flat land.

"It's sad to see it go after 160 years of being in our family — it's a shame — but having the money would be a great help to me in order to pay for my medical bills," Backlund said.

He added: "We did not want to have to sell the house but it came to a point where we had to. It's not something that we wanted to do."

A recent blood test indicated a mutation of the disease, which means he is eligible for a clinical trial, Backlund said; he is now waiting for the trial to begin and to see if he's been selected.

"Any improvement at all to my vision would be wonderful," he said.

Despite the unthinkable challenges, Backlund has tried to stay positive. "My entire life, all I ever wanted to do was help people," he said. "I don't think I ever did anything to deserve this, but I don't think this is a punishment of any kind by God. I instead believe this is a trial by God or a test. Either way, I will never give in — and I will never give up."

When Patch first interviewed Backlund in August, he knew his situation was dire: In July, he was diagnosed with Lebers Hereditary Optic Neuropathy, which causes vision loss and often presents in young males — and told he could be blind within six months.

And now, those words are becoming frighteningly real.

"Since the last time we spoke, my vision has gotten a lot worse," Backlund told Patch in October. "I first got diagnosed with the disease in July and I was able to see perfectly fine in my right eye. Then, within the last three weeks, the vision in my right eye has gotten a lot worse. My vision in my left eye is completely shot. I can't see anything in my central vision. The disease primarily affects the central vision of your eyes."

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."

Trying to explain the unthinkable, Backlund said: "It's very difficult going through this at my age. it's going to be a long time before a cure is found. My doctor thinks it will be about 10 to 15 years before a cure is discovered; it really depends on how fast stem cell research progresses."

Currently, Backlund said, the only option is gene therapy, "which is about one to three years out. Gene therapy has actually cured some people that have the disease, but only around 20 percent of people actually get cured from the gene therapy."

Living with diminished vision has cast a long shadow of what life ahead may become. But despite the overwhelming truth, Backlund said in the past months he's met many people who've helped to prepare him for the future.

"It's just difficult losing your vision at the age of 20. It's something I never would have expected. The diagnosis was shocking," he said. "A pastor recommended I read the book of Job from the Bible. It's a story of a man who has everything and has it all taken away as a way of God testing him. Maybe that's my purpose here, to be tested. It's depressing, but you can't ever give up hope."

Researchers are hopeful about gene therapy in treating LHON, a report by Vanderbilt University Medical Center said.

According to the National Library of Medicine, there is also a medication called Idebenone, which has been used to treat LHON patients.

"I've been in contact with other people who have the disease and they have been incredibly helpful in getting me set up for life once my vision is completely gone," Backlund said.

One man reached out, whose own son was diagnosed with LHON a few years ago. Others have contacted Backlund to share their experiences. "It gave me comfort speaking to other people with the disease, because of its rarity," he said.

As his eyesight fades, Backlund said he will need an aide. "My father took care of my mother who also had the disease, but because of his age he is unable to do that for me this time," he said.

The pressure of his diagnosis is exacerbated by financial concerns, Backlund said. "My mother passed with no life insurance."

His father, he said, has only his pension. "What scares me the most is what lies ahead," Backlund said. LHON, Backlund said, is rare, and "brutal."

Backlund has also been struggling with the sudden loss of his mother this summer and his grandfather, with whom he was very close, last year.

His diagnosis was devastating. "I'm still kind of in shock," Backlund said.

The past 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."

To donate to a GoFundMe set up to help Backlund, click here.
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