PCDH19 Moms

Moms of kids with PCDH19 are often fierce advocates, medical managers and public educators. First and foremost though, we are moms. We celebrate our children’s victories and mourn their heartaches. We cuddle our kids in the middle of the night and kiss boo boos. In honor of Mother’s Day, we asked some of our PCDH19 moms to share their favorite memories with their children. Their stories are below.



Julie said this photo captures one of her most treasured memories with Violet. Hiking was a huge part of their lives before epilepsy and behavioral issues complicated that. Julie said this was the last hike she took Violet on without fear of her seizing and falling or melting down or overheating.

“If I knew this would be one of the last times she would experience our beautiful world not under the influence of heavy medications that dull her senses and slow her cognition, I would have gone until the sun went down and gone along more slowly and intentionally.” – Julie

Julie and Violet



Helen sent this photo from a hospital room where Bella is currently fighting for her life. She said her favorite memory is when Bella first attempted to imitate peekaboo. Bella has severe delays and was just shy of 8 years old so it was a big achievement that filled her mama’s heart with pride.

Helen and Bella



Jennifer shared that she cherishes the memories of Jane’s first words. When Jane was a baby, she was always talking and learning new words. By the time she was 9 months old, she had quite an expansive vocabulary that she lost to seizures. Jennifer yearns to hear her little voice again someday.

Jennifer and her beauty, Jane