November is epilepsy awareness month. Reaching out to others for help is not something that comes easy for me. But to find a cure we need your help! My daughter Emma began having seizures just before she turned 10 months old. During that first cluster she had over 30 seizures in a 3 day period. The hospital ran every test during her four day stay and still had no answer as to why. Since then, she has battled with cluster seizures. Meaning she has several seizures over a 1 to 2 day timeframe. She is on 2 daily medications and continues to have seizures. We never know when they are coming, but we always know they are right around the corner.
This year, with the help of the PCDH19 Alliance, we finally got an answer as to why. Emma was diagnosed with PCDH19 epilepsy. It is a genetic clustering epilepsy found mainly in females. Having answers is good, right!?! It lets you know a why and puts you on a path... However with this type of epilepsy, there is no effective treatment. There is no cure or known path to take. For Emma, and the thousands of other children with this rare genetic disorder, this means she will always have seizures, her daily life will always be affected, medications will not completely control them...unless... researchers can find a treatment, or a cure! Please join me in supporting real change. Any donation you make will help researchers to find an effective treatment and ultimately a cure for PCDH19 Epilepsy.
The PCHD19 Alliance supports children and families fighting this disease through their patient assistance grant program. I encourage you to visit the PCDH19 alliance website pcdh19info.org to find out more about this disorder and why it is so important to find a treatment.
Thank you for your support!