Zoë was born on the 22nd August 2017 and we were the happiest and most excited parents after dealing with the stress of infertility for just over two years. We already knew she was going to be a girl and she made our lives complete.
I loved being pregnant and had no issues during my pregnancy to note. The first three months of Zoe's life went fairly smoothly but on 12/2/17 our lives changed forever. That day Zoë had her first seizure and it took us to the ER by ambulance.
Zoë was diagnosed with epilepsy later that month. She started showing signs of delay a couple months later and she started therapy.
Zoë has made so much progress but still has a way to go! Things have gotten better but we still battle seizure activity daily. In the months since her first seizure we have become frequent flyers at our children’s hospital, several ER trips by ambulance, two intubations, three ICU stays, g-tube placement, and many first holidays celebrated with amazing nurses and doctors!
Zoë is technically undiagnosed. Her seizures and delays are really symptoms of something else. After a lot of genetic testing we’ve narrowed it down to one genetic variant she has, CRELD1. She is currently in a study with GeneDx along with several other children so we are hoping one day there will be a name/disorder associated with her genetic difference. Either way she’s a rare warrior!
Though we never planned to be on this journey with our girl we wouldn’t trade her for the world. Her diagnosis/lack there of has opened our eyes to a whole new world of amazing parents and resilient kids!
Zoë is resilient, strong, sweet and wins over hearts with her amazing smile and tiny glasses!
You can hear more about our story here: