All my life, I thought that epilepsy was just a brain illness that causes seizures. Through the incredible journey we have taken with our granddaughter, Alex, we have come to find out that there are many forms of epilepsy and some are exceedingly rare.
Alex’s journey began at birth. At 11 weeks of age Alex had brain surgery for hydrocephalus. A shunt was placed to drain excess fluid from her brain, and she will have this in place for her entire life. Naturally, we all expected some developmental issues, as her head had grown 6 inches already and was too big for her body to support. However, that was not all she would contend with, as she started having seizures at 22 months old. It turns out Alex has 3 rare forms of epilepsy (Infantile Spasms, PCDH19, and Lennox Gastaut Syndrome), and they are all highly drug resistant. At 5 years old, Alex has had thousands of seizures that have already contributed heavily to her developmental delays. Research into treatments is vital to help Alex, and children like her have a chance to reach their potential and have a higher quality of life.
Our business is dedicated to Alex and other children like her, and to raising awareness, as well as funds, for the Rare Epilepsy Education Foundation, an organization founded by a mother whose child has a rare form of epilepsy. They help fund research and offer support to families facing this difficult journey. Therefore, a portion of the proceeds from the sale of our purple heart soap and the ladybug bracelet will go to this foundation. Purple is the awareness color for epilepsy and the ladybug is the symbol for PCDH19.
Thank you for taking the time to read Alexandra’s Story. Awareness is the first spark in creating meaningful change in the world of epilepsy research and education. Our hearts and prayers go out to all of the families struggling with this challenge. We see you, and we will continue fighting for you.