"We love you, Emily!"
"We love you, Emily!"
"For an amazing family! "
Help us find an effective treatment and ultimately a cure for PCDH19 Epilepsy.
We are fundraising to help improve the lives of families living with PDCH19 Epilepsy, including our daughter Emily. Emily is happy, bright, energetic almost 4 year old. She had her first seizure cluster at 6 months old and our lives have changed ever since. She is a fighter and amazes me with her courage everyday. We have been blessed in many ways but the journey is not easy. We constantly worry about when and if the next seizure will come, Our worry never ends. Watching your child seize and have no control is terrifying. And with all that - we have hope. We have hope that Emily's future will be bright. And hope there will be more treatment options for those suffering from intractable epilepsy. We want to help, not just because of Emily, but because these families need us.
PCDH19 is a rare spectrum seizure disorder with only a few hundred known cases. It's most common characteristic are clusters of seizures that are often difficult to control. Sometimes loss of hearing, and loss of skills are experienced after seizure clusters. Seizures are often drug resistant and difficult to control. Autism spectrum disorder or autistic features, behavioral problems, Aggression, ADD, ADHD, anxiety, and obsessions (OCD) are seen in many. In adolescents and adults, depression, bipolar, schizophrenia, psychosis and other mental illness have been reported. It is also estimated that about 70% of PCDH19 patients have intellectual disability of varying degrees, ranging from mild to severe. The list goes on and on.
The PCDH19 Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure; providing information and support to affected families; and assisting the efforts of the medical community, so that no family suffers without a diagnosis and the most appropriate medical treatment.
Please consider donating. Every little bit helps. Just a small donation will go a long way to helping me meet my goal for PCDH19 Alliance.