The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

EIN: 45-4020102

July 15, 2019

Please reload

  • Facebook App Icon
  • Twitter App Icon
  • Instagram Social Icon

Emily

Emily had her first seizure cluster on August 17th, 2016 at just 15 & 1/2 months old. She spent 6 days in the hospital undergoing many many tests to find out why she was having seizures. She had an MRI, spinal tap & tons of blood work. All came back normal. Only thing left to do was genetic testing. She was sent home on one seizure medication.

Emily was diagnosed with PCDH19 epilepsy on January 11th 2017. This is the day that our family's life changed forever. In January 2017 Emily was in the hospital for 17 days with 14 straight days of seizures. She was in the PICU for 12 of those days, 4 of those days she was intubated and in a medically induced coma to help stop the seizures. When Emily left the hospital she couldn't walk, stand or sit without assistance. 

Up until this point in January 2017, Emily was developing normally. Hitting all her milestones on time or early. She was talking, starting to potty train and even doing somersaults.  When leaving the hospital she was given more medications.  She has been going to physical therapy every two weeks since February 2017. 

She is delayed in her speech. She can talk and communicate, but not well enough to tell you she is sick or has an ear ache, or her stomach hurts. We mostly have to go by her cues. She is now in developmental preschool. She receives OT, PT & speech therapy 4 days a week during the school year, and 3 times a week during the summer for 4 weeks so she doesn't fall too far behind. We are currently waiting for an autism evaluation.

Emily typically goes 3-6 months seizure free. We can usually manage her clusters at home working closely with her neurologist or his team. The longest time seizure free she has had is 8 & 1/2 months. Every day seizure free is a blessing.