My husband, Ron, and I live in Ohio and have two beautiful daughters, Ava and Vivienne. Vivi is seventeen and is affected by CDKL5.
We were just settling into our new life with two kids, when Vivi had her first seizure at 4 weeks old. Everything changed in an instant. Our “normal” life was replaced with doctors’ visits, hospital stays, and tests. We received the CDKL5 diagnosis on November 11, 2008. Now that we knew what we were fighting, it was time for us to get busy trying to find a cure for it!
I was so blessed to meet other families that were walking my same path through the online support group. We brought an array of backgrounds together and formed the IFCR in September 2009. I graduated from Ashland University with a BA in Business Administration in 1994 and my MBA in 2000. When Vivienne was six months old, I left to stay at home with her and her sister full-time.
Our family has also been very involved in fundraising for the IFCR, and in 2023 we held our 15th annual “Vivi’s Drive for the Cure” golf outing. It has been my honor to be a co-founding member of the IFCR, and I remain committed to finding treatments and a cure for all of those affected by CDKL5.