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Ann’s Story

July 11, 2025
Denise Fabio
Living with PCDH19 / Personal Stories

Monday, June 13, 2011 was going to be like any other day, Ann and I were going to go to the park and run a few errands to get ready for her 1st birthday party. Ann took a good hour nap before we went to the park and on the way to she fell asleep. At the park she started to fall asleep in the swing so we left to run one errand before heading home. Ann fell asleep from the park to the store, which was less than a 10 minute drive. She fell asleep on the 20 minute trip home. At home, I put Ann in here highchair and she could not keep her eyes open. At this point I called the doctors office and we were told to head right in. A few minutes later the doctors office called back and told us to go to the ER. At the ER, Ann was diagnosed an ear infection and we were waiting to be sent home. Ann was asleep in my lap when her eyes popped open and her body stiffened. I thought I had hit her leg when I shifted in the chair and I was waiting for her to cry but it did not happen. I finally realized she was having a seizure. The doctors came in and told us it was a febrile seizure and sent us home.

The next morning, I was holding Ann and she had another seizure so Kurt called 911 and we were back in the ER. After 3 more seizures we were waiting to be taken to Peoria’s Children’s hospital. During our 6 days in Peoria Ann had 2 EEGs, an EKG, a MRI, a spinal tap, many blood draws and 11 more seizures. She was finally able to go home on June 19, which was Father’s day and her 1st birthday.

Since our first trip to the hospital Ann has 4 more clusters of seizures, two 24hr EEGs, an MRI, and many more blood draws. Ann has been on a combination of different medications from the time we got out of the hospital on her birthday. Some affect her behavior and one caused a new type of seizure.

We continue to be amazed by Ann’s growth and development and look forward to seeing more in the future.

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