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Boys Town Hospital’s Kristal Platt Doesn’t Let Blindness Block Her Vision of Helping Others

 

Monday, January 4, 2021

To say that Boys Town's Kristal Platt seems to always be looking out for someone else might be a tremendous understatement.

With less than five percent vision and considered legally blind, Kristal is a licensed certified genetic counselor and vision program coordinator at the Genetics/Center for Childhood Deafness, Language & Learning at the Boys Town National Research Hospital.

Kristal PlattBut she has made it her mission during her 30 years in the field to see that others with conditions like hers, especially children, are given the opportunity to experience normal activities they might not otherwise be able to enjoy. And today, she is also advocating for adults with disabilities facing issues with diversity, equity and inclusion in the workplace, working to create paths for them to overcome these challenges.

Kristal was 9 years old when she was diagnosed with Stargardt disease, a form of juvenile macular degeneration. The macula is the part of the retina responsible for finest acuity. Kristal said originally it was just thought she needed glasses, but as her condition worsened, she was diagnosed with the disease at the University of Wisconsin, the state where she grew up. Her central vision is primarily affected, causing poor recognition of facial features, color vision and difficulty with close work such as reading.

“If you want an example of what I'm able to see, let's say a computer has a million pixels," Kristal said. “I can see about 1,000."

While her brother also has Stargardt disease, her parents are both unaffected carriers of the autosomal recessive condition. Kristal also has a sister who does not have the disease.

Kristal never let her visual impairment slow her down, however. After graduating from high school, she received her bachelor's degree at Iowa State University and then earned her master's degree in Medical Genetics at the University of Wisconsin.

“At a young age I could explain inheritances and eventually this led to my career choice," Kristal said.

Landing her first job had a rocky beginning. Originally, she accepted a job in Chicago, only to find out her new employer chose not to honor its commitment. That ended up being a good break, however, as she landed a job at the University of Nebraska Medical Center in December of 1988. She worked there for 15 years until her sister, Shelly Carney, informed her that Boys Town was looking to hire someone for the “vision" component of the department at the Boys Town Hospital. Carney already worked at Boys Town as a preschool teacher and is a certified interpreter for the deaf. She was selected as the National Council for Exceptional Children, Teacher of the Year, in 2019.

“Coming to Boys Town was an excellent opportunity for me," Kristal said.

When she first arrived at Boys Town Hospital, she helped with the research laboratories by returning results for participants who had Usher and branchio-oto-renal syndromes. Today, she says she wears two hats, in genetics and vision, her two favorite areas. She presently works in the hearing and neurology clinics.

“I work with families to explain genetic testing, help them through the process and review test results," she said.

Kristal says her second hat is developing programs for families with children who are blind or visually impaired. The accessible egg hunt, called the Beeping Easter Egg Hunt, was held for the 13th time in 2019.

“Although it was designed for a child with a visual impairment, our event incorporates activities for families and friends to learn what a child who is visually impaired experiences. It allows them to interact in a fun activity together," Kristal said.

She also started Camp Abilities Nebraska because there were limited opportunities for youth with visual impairments to participate in sports and recreational activities. In 2019, Boys Town held its 7th camp. The camp is run by Boys Town National Research Hospital and Outlook Nebraska.

"When I was a kid, I couldn't play soccer because of not being able to see the ball," Kristal said. "My goal is to be able to bring this fun activity to the kids, so they get to compete just like their sighted peers."

Camp Abilities is filled with fun, but the experience the campers get is even more important.

"Being able to come to camp they can hang out with other kids that get it," Kristal said. "They don't have to explain about their vision, because everybody else lives the experience."

She says it allows the kids to run, play, fall down and get up, without their parents having to worry.

“Parents sometimes over-protect a child with a visual disability," Kristal said. “It's understandable. But at camp, the kids and the parents learn they can do more. It's ok to fall down and skin up your knee. That's why we have band-aids."

As if she doesn't have enough on her plate already, Kristal has also become a strong advocate for people with disabilities in their pursuit of equal opportunities in the workplace.

She serves on the National Society of Genetic Counselors' Diversity, Equity and Inclusion Advisory Committee. Kristal says many times people with disabilities have a difficult time securing workplace advancements and often struggle even getting in the door.

“We are making efforts across the country to improve diversity, equity and inclusion, but when everything is said and done, we always seem to look the same," she said. “Minorities and those with disabilities are very under-represented. Societal misconceptions keep companies from hiring these groups."

Kristal says she is proud of Boys Town for giving herself and others with disabilities opportunities. She said Father Flanagan laid the groundwork and led by example when he accepted all boys, regardless of their race, creed or cultural background.

“Boys Town has always supported me," she said. “Since I've come here, Boys Town has allowed me to do my job by providing all kinds of assistance. My colleagues make me proud to work here. Everyone is so supportive."

Kristal met her husband of 27 years, Dan, ballroom dancing. Together, they have three young adult children, Halie, Jacque and Nate.