On September 14, 2010 Kate was born along with her twin brother weighing in at 4lbs, 11oz. She was very healthy for being so little and went straight to the regular newborn nursery. She continued to develop at her own rate, while being incredibly strong for her tiny size.

August 12, 2011 everything changed. Right before breakfast, Kate was sitting in her highchair and had her first seizure. 911 was called and she was taken to the local hospital. After a spinal tap and a few more seizures, she was transported to the Children’s Hospital Colorado. She had a couple more seizures and was admitted. During another seizure, her oxygen level dropped critically low and code blue was called for the first time, there was suddenly a whirlwind of activity. She was quickly transported to ICU where for the next 2 weeks doctors worked hard to try and stop the seizures, many different meds were tried, countless blood draws, more spinal taps, 4 EEG’s, an MRI, CT & PET scan, feeding tube, PICC line and so many seizures I lost track. Code blue was also called 3 more times because her oxygen level drops so low so quickly. Finally one day the right cocktail of drugs seemed to work and the seizures stopped and Kate was diagnosed with refractory Epilepsy.

Since then, Kate has been in and out of the hospital many times. After more EEG’s, genetic testing, repeat PET scan, different drugs, more spinal taps, Kate was finally on, May 23rd, 2014, diagnosed with PCDH19. Kate’s first episode happened when she was diagnosed with an UTI, since then, her episodes are always paired with fevers. Sometimes the fever appears first, other times the seizures happen followed by a fever and her being sick.

Kate attends kindergarten full time in the special needs program and receives speech therapy, occupational therapy and is on a behavioral plan. She does have an intellectual disability, sensory disorder and ADHD. She is a very happy, healthy, stubborn, extremely strong, and loving girl. She loves the water, music, Mickey Mouse, playing on her tablet and being a daredevil. Kate has a twin brother and a brother who is 3 years older.


Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

EIN: 45-4020102

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