By Kathleen Ellyn
Wallowa County Chieftain
Kathy Jenkins of Joseph has risen above tragedy continuously throughout her life. When she was five, her father was killed and her sister Elizabeth Grote permanently handicapped in a car crash. Throughout it all, Jenkins survived and made a life in Joseph as a hairdresser operating her own business, Kathy’s Korner Beau-Tique, for the past 25 years.
The latest challenge, however, has nearly proven to be a knockout punch. Jenkins is blind, suffering from both macular degeneration and a rare genetic condition called pseudoxanthoma elasticum or Grönblad–Strandberg syndrome. As a result, she can only see very poorly through a tiny area in her peripheral vision.
“I can’t read anything. I have a 10x magnifying loop and that’s about the only way I can read a phone text right now,” she said.
She first learned she had the rare disease when she went to optometrist and specialist Doc Peterson in Enterprise in 1980.
“He looked in my eyes and said, ‘Oh, boy, Kathy. Do you have a problem,’” she recalled.
Unfortunately there was no treatment for the disease at the time. So, Kathy just went on with life.
She lost vision in her right eye in 2006.
She lost vision in her left eye in 2012.
“I gave up driving and gave up my business,” Kathy said. “It was one of the hardest things that I had to do because I loved going to work every day. I loved all my clientele.”
Her vision deteriorated to the point where she could no longer live alone and in 2013, her sister, Diana Stein of Joseph, moved in.
“There were things I really wanted to see in my lifetime,” Jenkins said. “I wanted to see the Inland Passage in Alaska and the ice, to go to New York and see the Statue of Liberty. Now, it’s hard to just go in a room and not know a person by sight that you’ve known all your life.”
Her family was immediately available to help drive her back and forth for treatments in Portland and her son, Ted, began scouring the Internet.
It was Ted who spotted a potential solution.
Now, Jenkins’ response to blindness may make her one of the most recognizable people in Wallowa County. The solution that her son found her was to buy Lt. Commander Geordi La Forge’s vision visor.
Jenkins’ new glasses are not exactly the same as those worn by the Star Trek character, but they can allow a legally blind person to see again.
They’re a technological miracle created by a Canadian engineer, Conrad Lewis, who was looking for a solution to the blindness of two of his sisters who have a form of macular degeneration. He created the eSight portable vision system. It allows individuals who retain even a tiny portion of sight to see clearly — as if they are looking directly ahead of themselves.
The glasses auto-adjust to distances or can be zoomed in by a magnification of 24X.
“When I was trying them on for the first time in Boise, I was looking out an 11th story window, and I could zoom in and see the people in a car on the street below,” Jenkins recalled.
The glasses do this by using a high-speed, high-definition camera that captures what the user is “looking at,” enhances that and displays it on two Organic Light Emitting Diode screens. Those displays can then be adjusted to where the wearers remaining vision can best read the image.
Only about 15 percent of the visually impaired population, an estimated 285 million worldwide according to the World Health Organization, are totally blind. Devices like eSight could help the other 5 percent.
“They go on like a regular pair of glasses and people know instantly if they work or not,” said Jaime Silverberg, advocacy manager for eSight.
The glasses have been available worldwide for several years, have been reported on and studied in many nations and have been championed by Major General Gale Pollock, a retired U.S. Army major general who served as the Deputy Surgeon General of the United States Army and as Chief of the Army Nurse Corps.
Pollock has been working with the Veterans Administration, the Blinded Veterans Association and the Wounded Warrior Project to find a way to make the devices available to veterans.
“Major Pollock is working with us through her not-for-profit The Overcome Vision Loss Foundation,” said Silverberg.
There is still no cure for the disease Jenkins has, but treatments to slow the progression are available. She receives those every three months.
The only obstacle remaining preventing Jenkins living a full and independent life is the same one in the way of every other person who could be benefitted by the technology.
It’s expensive. Insurance will not pay for it. Jekins must pay the $10,000 price tag.
Her friends have mobilized to help.
Judith Rahn opened a bank account at Community Bank where anyone can donate for the glasses or ongoing medical treatments at the Casey Eye Institute at OHSU to preserve her remaining sight.
Tim Parks of TW Bronze in Enterprise is donating several bronze works to a raffle to raise money for the glasses and ongoing treatments.
“I’ve known her for 30 some years, and I’m a friend of her brother, Scott Grote,” said Tim Parks. “She’s excellent, wonderful and there’s nobody more deserving. I really want her to make this goal so I’m getting together several bronze pieces so that there can be one raffle but three or four winners.”
The bronze pieces under consideration are his Fennec Fox, rabbits and other small bronzes valued at a minimum of $400 each. The pieces will be available for viewing soon and information on how to purchase a raffle ticket is forthcoming.
“I need Kathy to be cutting my hair — and she still does,” Parks said. “She’s just right up on my head when she does it now.”
Jenkins’ brother Scott Grote, a Wallowa County native who is now an Elvis Impersonator in Portland, is also planning a benefit performance in Wallowa County.
A Canadian benefactor will pay a third of the cost if she can raise the remainder by Jan. 1, 2018.
An online crowd funding page where people can donate toward the purchase has been created by eSight.
“We give her the resources to create her own story, and we provide the platform,” said eSight’s Silverberg. “Every dollar donated goes directly to her glasses. If she raises more than the cost, she may use the money for medical expenses or pay it forward and help fund someone else’s glasses.”
To donate to the eSight crowdfunding page for Kathy Jenkins, visit giving.esighteyewear.com/kathy-jenkins.
If Kathy misses the deadline for matching funds, her friends intend to keep raising funds until she has the whole $10,000.
“It’s just day to day, now,” Jenkins said. “I just put everything in God’s hands. What a blessing from God that gave people the talents to be able to build or make these glasses.”