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Kelly Burch | June 13, 2022
Kali Worth and her family. Courtesy of Kali Worth
• Kali Worth’s daughter had up to 200 seizures a day, plus other challenges.
• She eventually was diagnosed with SYNGAP1, a genetic condition.
• This is Kali’s story, as told to Kelly Burch.
I knew something was different about my daughter Kai long before I was ready to admit it. By her first birthday, Kai would injure herself when she got upset, scratching at her eyes and mouth or biting her wrists. She wasn’t walking or communicating well.
A friend with a background in childhood development once pointed out that Kai’s jacket was always falling off. Her body was so limp that the coat just slipped down. I got defensive because I wasn’t ready to admit to myself or someone else that something was wrong.
As a first-time mom, you don’t know what typical development looks like, so it’s easy to push your worries aside.… read more > “My daughter has a rare seizure-inducing condition. She wasn’t diagnosed until insurance agreed to pay for genetic testing.”