Your Voices: A race against blindness

An Arizona family is making sure they see as much as they can in a race against blindness, and one of their top visual destinations was right here in Western Washington and the greater Pacific Northwest.

They are also chronicling their journey to raise awareness about a disease that could soon rob their son of his vision.

If you were about to lose your ability to see, what would you make sure that you saw before losing your vision?

“Our mission is to see things this summer!” was the exclamation made by both Kristina and Steve Johnston.

They know that their 9-year-old son, Luke, will go blind and everything he sees will only be in his memories. So the family is trying to create those memories and burn images into his mind. It’s a race against blindness, and the family is turning the phrase “I can’t unsee this” on its head.

Kristina Johnston, Luke’s mother, knows that the phrase is usually applied to negative things, so she’s forcing it in a different direction.

“It’s a completely positive spin on ‘I can’t unsee this,’” she said.

The mother said her son enjoyed all the sights in Western Washington and that they wanted to pick the places and things that would be nearly impossible to forget.

“See things and imprint those memories and sights into our minds as well as Luke’s mind,” Kristina said.

Stephen and Kristina Johnston, and their children Luke, 9, and Tyler, 7, used part of their eight-week tour to visit our region, taking in Olympic National Park, walking the sands of the Washington Coast, and soaking in the Hoh Rainforest. Kristina admits the beauty of the Pacific Northwest is unique to them.

“We are all born and raised in Arizona, so the Pacific Northwest seems to be quite opposite to what we’re used to…Luke loves to be outside, he loves to play tag — big trees — are something he really loves.”

Luke could lose his sight as a teen due to a condition called retinitis pigmentosa due to Bardet-Biedl syndrome.

The medical situation is very serious, but Luke is also a kid and had one thing on his mind besides the trip of a lifetime: “I have a ginormous Pokemon card (collection)!”

His mother said each place they visit gets them to new and unique sights as well as new and unique chances to get those critical cards.

“...Part of our summer has been visiting Walmarts in a different place and collecting Pokemon cards,” she said.

Steve Johnston says the family resolved to seize the moment despite their son’s diagnosis.

“Taking things for granted is something that goes through your mind very early on when you get a diagnosis like this,” said Steve.

Both parents know that Luke’s vision won’t last.

“Sadly, it will not be very long until he starts to see a significant decrease in his visual abilities,” said Steve.

The family may be touring their dream destinations but they are also trying to call attention to the condition that is afflicting their son. Steve says raising awareness has a very clear goal.

“We are very hopeful because we do have a potential cure coming down the line,” he said.

The Johnstons say a UK pharmaceutical company could launch human trials for treatment in 2024 that could save eyesight for thousands of children.

According to the National Institutes of Health, retinitis pigmentosa (RP) is a group of rare eye diseases that affect the retina — the light-sensitive layer of tissue in the back of the eye. RP makes cells in the retina break down slowly over time, causing vision loss. RP is a genetic disease that people are born with. Symptoms usually start in childhood, and most people eventually lose most of their sight.

There’s no cure for RP. But vision aids and training programs can help people with RP make the most of their vision. The NIH says the most common early symptom of RP is loss of night vision usually starting in childhood. Parents may notice that children with RP have trouble moving around in the dark or adjusting to dim light. RP also causes loss of side — or peripheral — vision, so you have trouble seeing things out of the corners of your eyes. Over time, your field of vision narrows until you only have some central vision — also called tunnel vision.

“Beyond being a rare disease, it’s a potential single treatment cure,” said Steve, who also believes the condition and treatment do not get attention from large pharmaceutical companies because it is so rare and unlikely to create profits for the companies.

Steve is a physician, and Kristina is a nurse, so they know what their son is up against. They suspect his vision is already blurry, but they’re fighting for Luke to see our world before it goes dark for him.

“We’re going to go out and enjoy the world.”

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