‘A mourning that doesn’t really ever end’: How Schmitt was sparked to advocacy by son’s illness
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Who is Eric Schmitt?
Missouri Attorney General Eric Schmitt has drawn national attention for lawsuits challenging COVID-19 rules and the Biden administration. But has he always been like this?
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For as long as Missouri Attorney General Eric Schmitt has held elected office, his family has privately and publicly confronted a rare genetic disorder that has affected the course of his political career.
Schmitt’s son, Stephen, born in 2004, has tuberous sclerosis, a condition that affects roughly 50,000 people in the United States.
Individuals with what is commonly called TSC develop tumors throughout their body, including the lungs, brain, heart and kidneys. TSC is also associated with autism and seizures, both of which Stephen has.
At a 2018 conference on TSC, Schmitt delivered a keynote address in which he recalled how he and his wife, Jaime, discovered their baby son had the condition. They noticed a white birthmark on his leg that Schmitt said looked like an angel wing.
They expected a visit to the dermatologist to be a routine one. Instead, Stephen was put under a special light that revealed many more marks on his body.
“Although you want to resist the temptation of going on WebMD and looking these things up, the internet was a thing in 2005, and so you start looking at these things,” Schmitt said. “There’s a lot of fear. A lot of anxiety. And a mourning, almost, that begins that doesn’t really ever end.”
Schmitt has spoken publicly about how TSC, autism and seizures have affected his son and his family. He has championed legislation to aid individuals with disabilities and their families and cited Stephen as a factor in his decision to run for state Senate and later for state treasurer.
Schmitt’s U.S. Senate campaign said that if elected, he “will work with pro-life organizations and stakeholders in the disability community to find issues to solve just as he’s done throughout his public service.”
In 2010, the General Assembly overwhelmingly approved a bill co-sponsored by Schmitt requiring insurance plans to cover autism treatment for children. Democratic Gov. Jay Nixon signed it into law.
Four years later, lawmakers approved the use of CBD oil to treat epilepsy. On the Senate floor, Schmitt drew upon his family’s experience in asking for support, describing the frightening seizures his nonverbal son suffered.
“When he has them at night, all I can do is just hold him and say that I love him,” Schmitt said. “And I often wonder what he would say to me. Is he scared? How long is it going to last?”
Scott Rupp, a Republican former state senator who now sits on the Missouri Public Service Commission, had previously sponsored legislation related to individuals with disabilities. He indicated Schmitt’s entry into the Senate, in 2009, helped push the bills forward.
“When Eric arrived, his personal story and his advocacy and his ability to bring other people to the conversation is what basically helped us get things passed,” Rupp said.
This story was originally published November 14, 2021 at 5:00 AM.
