Sopris Elementary students take a peek into the world of rare genetic disorders — and share a message of inclusion
A group of Sopris Elementary School fourth grade students put their research hats on recently to learn more about rare diseases, including a disorder that afflicts one of their classmates.
Beyond the academics of it all, Rare Disease Awareness Day also provided a good lesson about accepting people regardless of whatever physical or mental constraints they may be dealing with.
Sopris Elementary student Turner Fautsko was diagnosed in 2017 with what’s known as KIF1A — a genetic disorder caused by one or more variations, or mutations, in the KIF1A gene, according to the National Organization for Rare Disorders.
Originally diagnosed with cerebral palsy — symptoms and characteristics of which are similar — it took extensive genetic testing to determine that Turner’s instead was one of only about 250 cases of KIF1A in the United States, according to his mother, Jenni Fautsko.
For the second straight year, she and Pam Tate, a significant needs special education teacher, organized Rare Disease Awareness Day on March 2. The day is normally recognized on the last day of February, which in a leap year lands on the rare Feb. 29.
“A lot of people with KIF1A were wrongly diagnosed with cerebral palsy,” Fautsko explains. “With Turner, all of the MRIs were clear on his brain, so we pushed to get the genetic testing. It took a long time and about $40,000, but finally we got the diagnosis in 2017.”
There are more than 7,000 known rare diseases that are being researched, which became part of the study for students in Tate’s class.
Last year, when the same group of students were in third grade, Fautsko presented a slide show about KIF1A and other rare genetic diseases. Since Turner’s diagnosis, she has been active with KIF1A.org to help raise awareness and support for research.
“Since the kids had already learned the basics, we thought we’d let them research rare diseases,” Tate said. “The students looked up information and prepared speeches to give to the class.
“There are a lot of medical and science terms that the kids had to learn to read, so it was challenging but I think it was more fun for them to learn a little more about their friend, Turner.”
The project also raised the students’ awareness about what some children live with around the world.
“Turner has taught them so much,” Tate said. “Now, when they go out in public and see someone who’s a little different, they’re more comfortable going up and saying ‘hi’ and asking questions.”
Student Eva Hassel said she learned a lot about rare diseases, but most importantly that, “If you see someone who has something like Turner, you should still treat them the same, because he’s still a person.”
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