Hope4Harper
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 heard of CDKL5, that's because it's extremely rare. So 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 olds can be pretty painful and confusing.
For me, the seizures stared just two weeks into my life. The damaging effects delyed 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 shinnier the better!
My loving parents, Dustin and Penny, took me all around the country, Boston to Carlifornia, 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 grwo, 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 seiuzres.
http://www.hope4harper.com
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