Kira has been a happy, silly, affectionate, impish and irrepressible child, but she has PCDH19 Epilepsy (Girls Clustering Epilepsy), a rare, severe and devastating seizures disorder which currently has no cure. Since her first seizure at 8 months old, she has had thousands of seizures and many hospitalizations in her lifetime. Through all of this, she has been a generally happy kid who gives the doctors and nurses hugs. But it has taken a toll and she is sad and frustrated more and more as she has become a teenager.
PCDH19 Epilepsy is characterized by early onset seizures (usually beginning between 6 months to 5 years of age) with seizures most often occurring in clusters of seizures that can last from a a day to weeks and are very difficult to stop with medications. The medications have all kinds of negative side effects that affect her quality of life, including some that are potentially life threatening. The medicines can affect speech, learning, appetite, mood, behavior, IQ, continence, balance as well as being hard on the liver and kidneys. And still they don't stop the seizures from coming.
Please support this incredibly generous and wonderful team of runners, and help us help Kira and others affected by PCDH19 epilepsy by making a donation to the PCDH19 Alliance to fund research into better, more targeted treatments for PCDH19 Epilepsy, and eventually a cure. To see the kinds of research that the Alliance has previously funded, check out http://pcdh19info.org/research/ .