SAG HARBOR, NY — A young Sag Harbor man who is going blind and has lost almost everything over the past year is finding new reason to hope — but still needs help to survive.
Christopher Backlund is just 20 years old. He is rapidly losing his eyesight due to a rare genetic disease, Leber hereditary optic neuropathy. During the past months, Backlund also had to endure the passing of his grandfather and his mother — and now, has been forced by dire economic necessity to try and sell his Sag Harbor home, which he recently inherited and that has been in his family for 160 years.
But in recent days, Backlund has seen a glimpse of hope in a new medication he’s been taking, idebenone.
“I’m only seeing minimal improvements at this point, but I am seeing improvements,” he said.
According to the National Library of Medicine, Leber hereditary optic neuropathy, or LHON, leads to bilateral central vision loss. In a clinical trial setting, idebenone has been shown to be safe and to provide a trend toward improved visual acuity, but long-term evidence of effectiveness in real-world clinical practice is sparse, the website said.
In addition, Backlund is hoping to be accepted for a clinical trial in Pennsylvania. Researchers are hopeful about gene therapy in treating LHON, a report by Vanderbilt University Medical Center said.
However, despite his inner faith, grit and optimism, times have been difficult; he’s running low on funds and needs help. A GoFundMe page has been created.
Backlund said he began taking the medication after a man whose son has the same disease reached out and told him about his son’s improvement.
“So far I’ve seen minimal results, if any at all, but they are still promising,” he said.
Backlund said he has the mutation of the disease that will be studied in the clinical trial and is hopeful that he may be accepted.
Despite the heavy cloud of uncertainty, Backlund’s indomitable spirit shines through.
“The reason why I’ve been so upbeat is because I firmly believe that I will be able to see again one day, whether that be through the medication or through the clinical trial,” he said. “I’m not sure, but I don’t think this will be permanent. I think this will be just a temporary thing.”
In the meantime, Backlund has been listening to audiobooks, podcast, anything that doesn’t require vision. “I don’t really watch a lot of TV anymore,” he said. “Sometimes I’ll try to listen to TV shows instead of viewing them.”
His faith has also been buoyed by the hearts and hands that have lifted him up during the most painful time in his young life. “The community outreach has been incredible, and I am forever grateful to everyone who has reached out to me to help me over the last few months,” he said. “My mother’s death has been incredibly difficult on me. It’s one of those things that I’m still having a hard time dealing with.”
Of having to sell his family home, Backlund said: “It’s a shame to see it go after 160 years, but it had to be done. 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.
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..
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.
When Patch first interviewed Backlund in August, he knew his situation was dire: In July, he was diagnosed with LHON, 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.
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; it really depends on how fast stem cell research progresses.”
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.”
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.
To donate to a GoFundMe set up to help Backlund, click here..
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