By Hannah Meiseles
As a teenager, Kristy Johnson thought she had her career all planned out. Raised in a small town in Indiana, she spent much of her childhood stargazing and mapping constellations. She dreamed of becoming an astrophysicist and pursued a rigorous academic path. After achieving top honors as an undergraduate, Johnson immediately began a PhD program in physics at the University of Maryland.
Everything changed when she discovered her son, Felix, had a rare genetic disorder, one with only seven known cases in the world. The condition is associated with delayed development, absent speech, severe intellectual disabilities, autism, epilepsy, and motor challenges.
“We knew that this would be something that would affect him for his entire life, and therefore us as a family. I knew I wanted and needed to stay home with him instead of finishing my PhD,” says Johnson.