OUR STORIES

On June 3rd 2010, Faith was born along with her twin brother. I was 36 weeks along and they were both 6 pounds plus and although her brother had a minor she was healthy . She was a great infant, happy, alert, just amazing. She went to her 6 month appointment had her immunizations and a clean bill of health. That night, while holding her in my arms I witnessed the first seizure I had ever seen. After bringing her to our local hospital, it was explained to us that children get seizures at the onset of a fever and it was common in children.

I was assured that she would grow out of it by the time she was 2, no big deal. Only 3 months later, Faith was hospitalized in the ICU of our local hospital. I will never forget the seizures that lead us into that hospital stay. The picture in my head of my daughter, unable to breathe, is one that haunts me even on good days. After that she was followed at our local hospital, test after test left us with out answers Still we were told after she turns 2 she will grow out of it. As Faith’s brother progressed developmentally, Faith really didn’t. Every hospitalization brought more frustration and fewer answers.

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I would discuss symptoms of behavior and seizure activity and be dismissed. My observations couldn’t be explained therefor they couldn’t have happened. Finally one day after Faith being taken in the ambulance to our local hospital and sent home and continuing to have seizures, I was scared and needed more answers. That night Faith ended up being admitted to Boston Children’s hospital for a week like she usually is for a cluster of seizures, but this time was different. The first night we were there we began getting answers. We were told about genetics testing which had been mentioned to us at our local hospital, but it was explained to me it was inconclusive, expensive and not an option for us due to hospital policy. Children’s Hospital ran those tests right away and they gave us answers and the reality that Faith will always have this condition. Although we got answers to some questions, many more go unanswered, as PCDH19 Female Epilepsy begins to be explored. Faith’s twin brother, as well as her older sister live with a constant worry that their sister and mother will be gone at a moments notice. Faiths grandma jumps whenever the phone rings in fear that Faith is sick again. Seizure clusters come in all types of weather,day or night, they come while she is happy and when she is sad we always walk on egg shells as much as we try to enjoy every moment. Faith receives speech, physical and occupational therapy.The long term benefits of these services and the future quality of life for Faith is unclear. Please help us help our girls and find a cure.