$10K glasses? A small price to help blind twin brothers with rare disease see again

WANAQUE — When you meet twin brothers Kenny and Justin Jongsma they look you squarely in the eyes and offer a friendly handshake.

It's firm, and they exude the confidence fit for two young men in the prime of their life. They smile warmly and are curious to get to know you.

But here's the thing. Kenny and Justin can't actually see you because they are legally blind.

Seven years ago, at the age of 21, their eyesight began to suddenly deteriorate. They were diagnosed with a rare genetic disease called Leber hereditary optic neuropathy.

"One day I just woke up, contacts in and everything, and I was able to see a little bit less than normal," said Justin.

He was the first of the brothers to experience the mysterious vision loss.

"At first I didn't think anything of it. I was just like, 'OK, maybe I just need to up my prescription.' "

His eyesight worsened. Kenny's too.

"It was really scary because I was only just behind him," Kenny said.

For two months they had no idea what was happening or why.

Kenny was first to be diagnosed.

Kenny said it started out as a small dead spot in his left eye. It spread and worsened week by week.

Now both can only see out of the peripheral vision area of their eyes.

"It pinches the optic nerve shut so we don't have the central vision," Kenny said of the disease.

What do they see?

"The way that I explain it is - think about when you look up into the sun or a bright light for a couple seconds," Kenny said. "You look away. In the middle there you get the big colored spots." 

Justin agreed except for "minus the color."

"Yeah, minus the color," Kenny said. "It's like a white, just nothing."

Justin: "It's not even white. It's really hard to explain. It's almost like if I'm looking at you, it's almost like somebody took an eraser and went like that, but minus the streaks," he said as he motioned back and forth with his hand.

Kenny: "It's hard to explain exactly what it is."

Their eyesight is not expected to get any worse. There's even a very small chance it could improve as it did with their late uncle, Walter Reinson, who was diagnosed with Leber's at the age of 40. 

"My brother was lucky enough to get most of his sight back," said Dee Jongsma, the twins' mother.

But how realistic a reversal is for her sons is not clear. Reinson's vision became as bad as theirs, but it started to improve after a year or two. It's been almost seven years for Kenny and Justin. Dee said with one of the strains of the disease there is a 4 percent chance for eyesight improvement.

What is Leber?  

Not much is known about the disease. Sudden bilateral, painless, vision failure develops in young adulthood from 20 to 30 years old and about 95 percent of those affected lose their vision before they turn 50, according to the U.S. Department of Health and Human Services Genetic and Rare Diseases Information Center. 

"It started out as minimal vision loss but then it kept getting worse and we were afraid what will happen if they go completely blind," Dee said. "Which is a possibility with Leber's. It could go all the way. But at this point it's not going to get any worse."

Dee said the family was relieved when the progression stopped.

"At least they had their peripheral vision," she said.

Kenny and Justin's older brother, Chris, experienced vision problems as a result of a head injury from a car accident when he was 14. It was never diagnosed as Leber's disease but she says it's possible it was the same thing. His vision improved after several years, Dee said.

Hereditary 

The disease literally runs in the family and is more common in males.

"Thanks, mom," joked Kenny.

But the whole thing has been tough on Dee, who blames herself to an extent for what happened to the twins.

"It does come from the mother's side," Dee said. "It was just shocking that this would happen. Even though my brother had it you just never think it's really going to ever happen again. I think what helped me out a little was the fact that Kenny and Justin dealt with it so well."

She wasn't sure how they would handle it emotionally. Kenny had just gotten his dream Camaro and four months later he couldn't drive it anymore.

"It's heartbreaking to think at such a young age that they'll never have their full vision," Dee said.

Living with Leber's

Kenny said it was a rough age for it to happen. 

"I was still very excited about driving," he said. "It was still fairly new. We were still young."

Justin said he's become less social and doesn't feel as free as he did before the condition set in. He had moved out of his parents' house and was living with his girlfriend. But when his eyesight worsened they broke up, and he was forced to move back home.

Justin hates that he has to rely on others to get him to work and to help with everyday tasks. He said he feels like he's a burden on people. He misses the spontaneity of hanging out with friends when they suddenly decide to go to a concert or to the movies.

Kenny and Justin do both of those things, which they really enjoy, but because of their limitations everything has to be just right. The experience is also nothing like what a person with full vision sees.

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"I either have to prepare or make sure, 'OK, I'd love to go but we have to call and make sure we get these specific seats because I want to be able to see," Justin said. "It's supposed to be a spontaneous thing."

Kenny said he has that one sweet spot where he has to sit at the movies or he's just wasting money.

"It would be great not to worry about: is this exact row taken?" Kenny said. "You don't want to sit too close, but I can't sit too far away. When you are doing certain things with this condition you have to do it in a certain way."

They recently saw "Avengers: Infinity War". Seeing it on a large screen helped, but they still had to trade notes afterward.

"Amazing movie," Justin said. "He can see a little bit better than I can all in all. I was able to see but both of us still missed a bunch of stuff that happened. Just little stupid things that you find out afterwards happened. He actually saw it again so he was telling me some things that he saw that time. I was like, 'really? I was watching the screen. I didn't see that happen.'"

Going to work 

Kenny and Justin work part time at ShopRite in Oakland where they stock shelves overnight. Justin was working there when his vision began to go. He said his supervisor is very understanding and gave Kenny a job after his eyesight deteriorated. 

It's not easy, they said. Sometimes they use their phone to zoom in on bar codes or use other tricks to help them do their job.

"He was nice enough to put me in aisle and have me work on stuff that is much larger, more colorful so that I could see and learn easier," Kenny said of his supervisor.

Color is key when they are packing the water or soda aisle. Vintage Seltzer has blue labels, for example, and they can match the colors of fruits and flavors. It's hard to stock different aisles, Justin said, and there is little chance for them to advance and increase their wages. 

Kenny receives social security disability benefits from the federal government and is on Medicare, which he said helps. But, Justin doesn't receive any benefits and fears losing his job if he tries to seek public assistance and it isn't approved.

Technology may help

What if you there were magical eyeglasses that could help? Well, there are, the brothers said.

They are called eSight 3 and made by eSight of Toronto.

The technologically-groundbreaking device uses a high speed, high-resolution camera to project real-time images to the wearer. The feed is then projected in color on near-to-eye OLED screens with unprecedented clarity and virtually no latency or delay, according to the company.

"eSighters" can adjust the color, contrast, focus, brightness and magnification using a 24x feature. They are adjustable and bluetooth and wi-fi enabled so users can stream video and games from a laptop, TV, or tablet. They can also be used to take photographs.

The company's founder, an electrical engineer, set out in 2006 to help his two legally blind sisters see.

Kenny and Justin light up when they talk about the glasses. They've both tried them out in demonstrations and say they work wonderfully for them.

"It was just amazing," Justin said.

He zoomed in on an eye card during an eSight demo and could read the letters. He adjusted the contrast and made the background yellow, with big bold numbers. Kenny said there is also a negative view option to see the world. 

"That's not how normal people see," Justin said. "They don't see in yellow and black. But for me to be able to tell what something is like that."

Kenny: "If seeing the world in those different colors and contrasts is what helps you then whatever. I don't mind if trees aren't brown and green anymore. They could be yellow and purple if that's what helps us see them there."

Justin: "If seeing the world like RoboCop is what it takes to see."

The problem is the glasses cost $10,000 each pair.

They brothers have saved a bit of money and they have received a few hundred in donations on their eSight funding pages. But there is still a long way to go.

The eSight glasses, the Jongsma twins said, would allow them to get back to living something of a normal life and do many of the things they did before Leber's took their vision away. They could walk around the corner to the CVS without worrying about bumping into someone or something — like a tree or stop sign. 

The technology might even allow them to get full-time work, move out of their parents' house, and advance in their careers.

"I kind of almost in a way feel stuck here," Justin said of his current job. "I want to be able to get full-time at some point especially if this is going to be my condition forever. I've come to terms with it but I still would like to improve it and I still would like to try to make a living. These glasses would help with that."

While eSight would help Kenny and Justin in countless ways the brothers wouldn't be able to drive again. But biking is a real possibility. They talk about the idea of maybe getting around on an electric bike.

They could spend more time outdoors and regain some of the freedom they lost.

"I used to go for hikes all the time," Justin said. 

"It would be perfect for activities like that," Kenny said of the glasses. "It would help us see the trail markers or street signs. It's a pretty amazing piece of technology. I'd love to get outside. Do some more hiking. I used to like just walking. It would feel a lot more comfortable if I could see better."

Their concert and movie-going experiences would dramatically improve. They would also be able to recognize co-workers and friends from further away and it would improve their social interactions. 

Justin has a GoFundMe page, but Kenny does not because of disability benefits income restrictions. Both have eSight pages. 

 Justin has also been keeping tabs on the latest experimental medical trends involving the legally blind. He said there are companies having success with eye injections, but said such procedures would be out of reach at $100,000.

For now, getting a pair of eSight glasses is a lofty enough goal, he said.

A spokeswoman for eSight acknowledged the prohibitive cost of the technology, but noted through growth and technology advancements they've been able to get the price down from $15,000. 

"The unfortunate reality is that most public sector programs and insurance companies do not yet provide financial support for wearable assistive technologies for low vision–despite their ability to essentially replace the function of a damaged organ," said Laura Chau.

She said that as a result 70 percent of visually impaired Americans face unemployment, and almost 30 percent are living in poverty.

"This technology can change this," she said. "Because of eSight, people living with visual impairment are able to complete their studies, go back to work, and live their most fulfilled life, with sight–it is an investment."

HOW TO HELP

Twin brothers Kenny and Justin Jongsma have a a rare disease called Leber hereditary optic neuropathy that had rendered them legally blind. 

Their eyesight began to deteriorate 7 years ago at age 21. 

They are trying to save up $10,000 each to purchase special eyewear known as eSight that will help them see. 

f you would like to help Kenny and Justin purchase these special glasses, visit:

http://giving.esighteyewear.com/justin-jongsma

http://giving.esighteyewear.com/kenny-jongsma

https://www.gofundme.com/help-justin-see

Follow Jai Agnish on Twitter: @JaiAgnish. Email: agnish@northjersey.com