Blinded by rare disorder, Alberta man fundraising to regain vision

Kevin Michael-Gagner woke up one December morning to realize the vision in his right eye had turned into a "black hole."

'I woke up the next morning and I was blind in my right eye. It happened just like that'

Kevin Michael-Gagner shared his story with CBC Radio host Portia Clark. (CBC)

Kevin Michael-Gagner woke up one morning with no vision in his right eye.

"I was watching Netflix on my iPad in my bed, just before I went to bed, and I felt like my eyes just went a little foggy, like I had something in there," he recalled in an interview with CBC Edmonton's Radio Active.

"I woke up the next morning and I was blind in my right eye. It happened just like that."

Six months later, in June 2015, the Sherwood Park man was waiting anxiously for a diagnosis when he suddenly lost vision in his left eye.

"I'm sitting on the couch, waiting for mom to come upstairs to go to a doctors appointment. [She finds] me on the couch bawling my eyes out, and she asked me what happened and I said, 'It's happened again.'

"We rushed to the retina clinic and the doctor said, 'I'm sorry. You're blind in the other eye and there is nothing we can do. Because we don't even know what this is yet.' "

After months of tests and scans, doctors eventually discovered the arteries in Michael-Gagne's eyes had been leaking blood, crushing the retinas.

The condition, called serpiginous chroroiditis, is an extremely rare inflammatory disease. The cause remains a mystery to the medical community but the disease is believed to be an autoimmune disorder. 

'A living battle'

Michael-Gagne, now 22, still has some peripheral vision and light sensitivity but nearly 95 per cent of his vision is gone.

A first-year apprentice welder, he loved his job and was preparing for his second year of school when he lost his sight.

"I can't weld anymore," he said. "I got my vehicle impounded. Because I wasn't working anymore, I couldn't make payments. My girlfriend left me.

"I went from working 12 to 16 hour days, every day, absolutely loving to work, to doing absolutely nothing and having absolutely nothing and having to move back home."
Just over two years ago, the lights went dark for a young Sherwood Park man. A extremely rare eye disorder caused him to lose his sight. There's now light at the end of the dark tunnel for Kevin Michael-Gagner but a lack of finances is preventing him from getting his life back on track. 7:13
In the grips of a deep depression, he contemplated suicide. He sought professional help but still felt lost.

"I saw some psychiatrists and they sort of helped me through it, but it's still a living battle you have to deal with every day, because you wake up and you still can't see."

Treatment options are limited. He is on a daily regimen of steroids but has little hope the medications will restore his sight.

Now a new technology promises to lead him out of the dark. It's called eSight, electronic glasses for the legally blind.  

'It would give me my life back'

Michael-Gagner began researching the technology after he realized that if he held his phone a few inches from his face, he could see through the camera lens.
(Kevin Michael-Gagner/Facebook)
eSight glasses work in a similar way, allowing users to zoom in and focus on the world around them by using high-definition video display.

The glasses could restore his sight but the technology is expensive. A single pair costs more than $12,000. The glasses are not covered by insurance or government assistance.

Michael-Gagner is now fundraising to restore his vision. With the glasses, he's confident he can get his old life back. He wants to return to trade school and build houses as a master framer.

After waiting for months, he recently tested the glasses at the Alberta Retina Clinic in Edmonton.

He found he could read the fine print on no-parking signs 30 feet away, and see the smile on his mother's face across the room.

"I put them on and I instantly starting crying, because I could see life all over again," he said.

"It would give me my independence back, it would give me my life back."