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Federal Way family fights retinal disease through VisionWalk
Imagine being told that you are slowly losing your sight. Imagine being told that one day, you will be completely blind because of a genetic defect in your eyes. Imagine knowing what the world looks like, and imagine having that taken away from you.
Those hard thoughts are some that brothers Matt and James Hoag, and their parents Mike and Mary, have had to contemplate in the past few years. Matt and James were diagnosed with retinitis pigmentosa (RP), a retinal degenerative disease that slowly contracts the field of vision for those affected by it.
The family plans to raise awareness and money for research for RP and other retinal degenerative diseases on Oct. 9 in Seattle’s Magnusson Park as part of the Foundation Fighting Blindness VisionWalk.
Mike Hoag attempted to explain what his sons are experiencing. He said RP means those affected end up seeing life through a gradually narrowing hole.
“The boys have limited night vision and limited peripheral vision,” the elder Hoag said. “The progressive means it gets narrower and narrower over time. It’s like looking through pinholes or small holes in cardboard or a paper cutout, and those holes keep getting smaller.”
According to a Wikipedia article on RP, the condition is “a group of genetic eye conditions that leads to incurable blindness.” RP starts with night blindness and then progresses to the tunnel vision Hoag described above. Some RP patients do not go legally blind until their 40s or 50s, and retain some sight all their lives, according to Wikipedia. Others go completely blind from RP, in some cases as early as childhood.
RP attacks the photoreceptors in the eye, the rods and cones, by causing abnormalities in those structures.
James, 28, is affected especially by RP because of his job as a video game tester. Matt, 30, is a faculty member in the accounting department at Cal-State Sacramento. Matt graduated from Federal Way High School in 1999, while James was a 2001 graduate of FWHS. Both of his sons have made Mike Hoag proud in the way they’ve dealt with this difficult and eventually debilitating disease.
“I’m just amazed at the courage my two boys have in dealing with this because I know the courage it takes in dealing with this every day, as they face new challenges like giving up driving a car or realizing new challenges in a profession you’re pursuing, because now you’re going to have to do it with limited eyesight,” Hoag said. “I guess for me...it’s a feeling of sadness for them, but really, I’m amazed at their courage through all of it.”
Hoag said that both Matt and James still have enough vision to not require aides of any kind. However, he said Matt has been thinking about turning to such things.
According to Hoag, RP is a genetic condition, but that there was no history of it in the family until Matt and James.
“Many people like my son Matthew, self-diagnosed,” he said. “He knew something was going on and kept pursuing that. Mary and I didn’t think much about it because it’s a genetic condition and we weren’t aware of it in either of our families. So, we still don’t really have any clear traces beyond our two boys.”
Hoag said the University of Washington is currently conducting some cutting edge research, and that funds raised from VisionWalk could help further similar efforts.
“The UW has some very interesting programs where they’re actually looking at stem cells, where they can take your own cells, create stem cells for your body and make them into a retina, and then start testing different medications to see those that might stop the progress, or actually, even reverse the progress,” he said.
While his boys face a tough road, Hoag said he and wife, Mary, find a silver lining in many ways for the condition affecting their two sons.
“I derive hope from looking at some of the research that is going on being supported by the Foundation Fighting Blindness. I guess hope is very important to both Mary and I. We gain hope by keeping informed about all the good research that’s going on, and then we support those efforts by trying to give personally and by raising money for the VisionWalk,” he said.
The VisionWalk will starts at 9 a.m. Oct. 9 in Seattle’s Magnusson Park. For more information, visit www.visionwalk.org.