A Little Girl's
Legacy of Hope
"My name is Harper Elle Howard, but you can call me Harperpotamus. Although my experience was only 5 years long, my story lives on through the millions of people who suffer from epilepsy, recurrent seizures, and the rare disorder, CDKL5.
If you’ve never head of CDKL5, that’s because its extremely rare, it doesn’t even have a name. Referred to simply by the gene it effects, CDKL5 causes brain-damaging seizures. Over 40 per day, which at 2 years old can be pretty painful and confusing.
For me, the seizures started just two weeks into my life. The damaging effects delayed how I grew and learned. Although it was hard to show it, my favorite things on earth were my big sister, Lily, purple hippos and shiny beads. The shinier the better!
My loving parents, Penny and Dustin, took me all around the country, Boston to California, searching for a way to stop my seizures. They even started a charity in my name-Hope4Harper, a nonprofit that helps raise money and awareness for seizure research.
I help too! My cells live on, like tiny sparkling beads, at the University of California, San Diego. There, they shine and grow, until they’re ready to travel the world in the name of seizure research. I like knowing that I leave behind a legacy of hope, and that someday I might just help find a cure for seizures!
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