Our daughter, Violet, lives with PCDH19 Epilepsy. After her first seizure at 10 months old, she lost her first words and lost her ability to pull herself up and had to relearn everything. Before she was 8 years old, she had 1000's of seizures.
Almost 11 years old, Violet has been 3 years seizure free, but the affects of those seizures and the reality that they will likely come back in full force during puberty, sits with us everyday.
Violet takes 4 daily medications, strong drugs that would make most of extremely drowsy and irritable. One of the drugs is associated with loss of word recall and memory problems. The drugs affect her mood, her behavior, her ability to fully participate in activities. One of them even inhibits her ability to sweat properly. She sleeps with a pulse oximeter, because we have heard code blue on the hospital PA twice in her lifetime, and we don't ever want to hear that again. Every year, since co-founding the PCDH19 Alliance in 2012, Matt and I, with the help support from our friends and family, have organized at least one fundraising event, and this year, I am choosing to do something out of my comfort zone again by running a 5k; because Violet lives outside her comfort from the moment she wakes up, til the moment she falls asleep each night. She lives outside her comfort zone socially, physically, emotionally, educationally and she too, fears when and if the next seizure will come. When Violet and Rory ask me if she could die from a seizure, and as long as my answer is "yes", I have to take action, I have to raise funds for research, I have to let them know I am doing everything I can, to make seizures a thing of the past in her lifetime. As the President of the PCDH19 Alliance, I see the strong science we are funding, and this year we received more proposals we want to fund in September.
If you are able to, pleas join our fight and consider making a donation today to support our efforts to fund research into PCDH19 Epilepsy.