It was two weeks into his first year of university when Ben Ho Lung started having trouble getting around.
The 18-year-old was starting his studies at York University, away from his home in Aurora, when he started bumping into things more and more.
“I thought, ‘Wow, I need to pay more attention to where I’m going.’ But then glares started to bother me so I thought I should probably get it checked out,” he said.
He was eventually diagnosed with Retinitis Pigmentosa, a rare degenerative condition that causes eyesight to deteriorate over time and lead to blindness. There is no known cure for RP.
The doctors told him he had about 10 to 15 years ahead of him where his vision would progressively decline.
“Ben’s attitude, as Ben is, he said, ‘Well, that really sucks but I have 10 to 15 years to get a degree, to get a family going, to set my life up, so I can make this work,’” his mother, Leslie Burns, told CTV News Toronto.
But, Ho Lung noticed his vision change far more quickly than expected. Two months later, he was declared legally blind.
The scope of vision the disease destroys over the course of decade, Ho Lung lost over a period of three months.
“I went from having about 90 degrees of vision to about 20 in total over the span of two or three months,” he said.
“By November, I went from half a field of vision to about a pinhole.”
Ho Lung says he’s still able to see most things normally but his peripheral vision has been significantly reduced. He compares his eyesight to having permanent tunnel vision.
Pointing to a bookshelf in front of him, Ho Lung says, “Where you would see one end of the bookshelf to the other, I see less than half.”
“It still looks the same it’s just considerably less wide overall,” he said.
His humour, on the other hand, hasn’t flinched. When asked how the change affects his day-to-day life, he simply said:
“Mostly, I bump into stuff.”
Realizing the unusually rapid pace her son’s vision was deteriorating, Burns said she scrambled to find a specialist who could treat him. Her attempts in Toronto bore no fruit and despite her son’s overly realistic attitude about the situation – “If you can’t do anything, you can’t do anything,” he said – Burns was determined.
So when a family friend told them about a specialist in New Jersey who developed experimental treatments for RP, Burns said she knew they had to go.
The treatment involves acupuncture near the eyes and the introduction of an electrical current. It starts with a two week stint of intense sessions twice a day at a cost of $2,000 U.S. a week.
But, to the shock of his family, not only has Ho Lung had no additional loss eyesight, he’s actually regained seven degrees of vision.
“It has stopped it in its tracks and, if anything, there’s been improvement in the acuity of the vision he does have left,” Burns said.
“The way he was going, he would have been completely blind by Christmas.”
But, Ho Lung requires several more treatments to upkeep and hopefully improve his condition.
The first trip alone cost the family $12,000.
Burns, who is the sole financial provider for her two sons, took on three jobs over the holiday season to help pay for the costly treatments.
“You do everything in your power to protect them, right? And this is something I can’t fix, so what we can do, is do everything in our power to make sure he is set up for a very productive, happy, healthy life,” she said, holding back tears.
“I didn’t know what else to do, so I reached out through GoFundMe.”
The fundraising effort, which has already raised over $9,000, has aptly been titled “Ben’s Adventure Plan.”
Burns said the money raised will go toward the treatment and “hopefully a trip or two,” so Ho Lung can “see some of the places he’s always wanted to see.”
“He is my hero. He’s extraordinary,” Burns said through tears.
“Of course he’s had his moments, there’s no question, but Ben looks at life like an adventure, he really does. So he’s like, ‘Okay, if this is what’s been handed to me, let’s see how I can make this work.’”
For now, Ho Lung is focusing on his education.
“The school (York U) has been really great about accommodation. They get tests printed out in size 36 font. Like, the English (test) I wrote last September, the original copy was three pages but the copy that I wrote with size 36 font was like 15 pages,” Ho Lung said with a smile.
“I want to get a decent job,” he said. “And I just genuinely like to learn new things.”