Durham family continues to raise awareness for daughter's rare eye disease
Walking with a Vision comes to Tualatin Community Park Sunday, May 17, with a goal to raise $25,000 for the Foundation for Retinal Research
Bubbly and talkative and always willing to make fun of her mom and be made fun of by her mom in return Clara Johansen is a typical 12-year-old. She plays piano, is in a debate club, and goes to camp in the summer. Shes not much into team sports, but shes danced since preschool.
Clara is also legally blind, but she doesnt seem to dwell on that too much.
Normal people have 20/20 vision. That means they see whats at 20 feet at 20 feet, said Clara, a Twality Middle School sixth-grader. Mine is either 20/300 or 20/400. So what normal people see at 20 feet, I see at 300 or 400 feet away.
When Clara was an infant, doctors ran tests to discover if she had Leber's Congenital Amaurosis, a degenerative vision disease. They thought it was a long shot there are only about three cases per 100,000 births but they wanted to at least cross it off the list. As it turned out, Clara did have it, and she had one of the rarest forms.
It sounded scary, kind of, when you have a little baby and you think about that baby being blind. Theres such a range of blindness out there that you dont even understand or know what that is. And she was 1, so we didnt know how much she could see, said Laura Johansen, Claras mom. You go into the pity party. For us, it wasnt for terribly long.
Doing their part
Laura and her husband Mark became involved in the blind and visually impaired community, and began learning more and discovering what they could do. The Johansens, who live in Durham, didnt want to sit idle they wanted to help make change.
This Sunday, May 17, marks the eighth rendition of Walking with a Vision, which for the last several years has been a biennial tradition run by the Johansen family. This years event will be held at Tualatin Community Park. So far, the walk has raised more than $150,000 for the Foundation for Retinal Research, with a goal of raising another $25,000 this year. But for the Johansens, its about more than collecting donations.
Raising awareness for us is way more important than the money, said Laura. What I would want people to take away is learning how to treat people who are visually impaired or blind in a way that makes them feel included, and knowing when and when not to step in and help them.
Theres a fine line between helping and too much help, Clara added.
And people dont know what that is. If we dont educate people on how to do that, then I dont know how they would know, said Laura. People dont just instinctively know. And with the different levels of vision with people, that amount of help is different for different people.
What is LCA?
Most people living with LCA got the disease because their parents carried a recessive gene, giving their children a one in four chance of getting it. This form of the disease is called autosomal recessive. A very small fraction of people with LCA are autosomal dominant, and Clara is one of these people. Seventeen variations of LCA exist, said Laura, and though strides in research have occurred since her daughters diagnosis, she said that none of them apply to Claras condition among those with this already rare disease, Claras case is even rarer.
Right now, still, for hers theres nothing, Laura said. Theres stuff theyre working on, but for her, its going to be more stem cell, cell therapy, than it is going to be gene therapy.
So, from a young age, Clara has learned to read and write in braille in case her vision worsens, though so far its remained relatively stable and she can see well enough to read font thats at least 36 point. However, because papers with large type start to stack up, much of her reading is done on iPad.
Still, Clara doesnt seem concerned by her limitations. Shes starting to walk with a cane to prepare for the days when her parents or older sister Emily arent by her side. Shes also bungee jumped. And shes testified before legislators at the state capital. And she has a story to tell for every occasion.
If Clara is bothered by her disease, she certainly doesnt look it. She does, however, want the greater public to be more educated about what she, and other blind and visually impaired people, go through every day.
She wants people to see what its like to have what I have and do the things that I do on a daily basis, like doing a worksheet or finding out what time a movie is, Clara said. Something with acuity goggles on or a sleep shade to make cereal or whatever, and just seeing what its like to do it for five minutes and see how challenging it is, and trying to think about what it would be like to do it every day.
And for the Johansens, while getting through the day might come with some hardships and accommodations, it also comes with a heavy dose of laughter. This is a family thats able to find humor in most things, because as they said, you just have to. This reality clearly presented itself when they discussed why Claras never been much into sports.
Clara has a disease, said Laura. Its called LPTS Low Pain Tolerance Syndrome.
That has nothing to do with this! Clara said, laughing while shooting a look at her mother.
At 12 years old, Clara is extremely eloquent for her age. Shes full of an energy thats hard to describe, but erupts in small bursts, proving shell be a force to reckon with someday. Clara might be visually impaired, but that is just a spec on the map of all the other things she hopes to grow up to be.
Walking with a Vision; 2.5 mile walk, silent auction, various activities and crafts. Proceeds benefit the Foundation for Retinal Research
Sunday, May 17
- noon-1 p.m., registration and silent auction
- 1-1:30 p.m., presentation and refreshmants
- 1:30 p.m., Walk-a-thon begins
Tualatin Community Park, 8515 S.W. Tualatin Road
$20 individual with shirt, $15 individual without shirt, $80 any size family with shirts, $60 family without shirts
If you want to learn more, register ahead of time, or wish to donate, visit the website.