Rachel Sexton wrote -
Laps for Ladybugs is a family friendly walk taking place in multiple cities throughout the world (including Hazlet NJ!) to raise funds to support the PCDH19 Alliance and the world-class research we fund. We are relentlessly and urgently working toward a treatment for this devastating and deadly rare disease that starts shortly after birth and causes clusters of life threatening seizures and also leads to cognitive impairment and other devastating symptoms. Please join our work and be a part of changing lives!
Emily is happy, bright, energetic 4 year old. She had her first seizure cluster at 6 months old and our lives have changed ever since. She has been through a lot in a short time: weeks in the ICU, EEGs, MRIs, spinal taps, countless blood tests. She is a fighter. Our worry never ends - when and if the next seizure will come, if she will live a normal life, have normal behavior, and normal cognitive ability. 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. We are blessed Emily lives a mostly normal life most days, but others are not so lucky.
PCDH19 is a spectrum seizure disorder. It's most common characteristic are clusters of seizures that are often difficult to control. 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.