My name is Lisa, and my daughter Faith Autumn Tremblay was born on Valentine’s Day 2003. She was diagnosed with Periventricular Nodule Heterotopia (PNH) in June 2005. At the time of her diagnosis, she was having over 140 seizures per day. Until three weeks prior to her diagnosis, she never showed any signs of seizures or that she was born with this rare condition.
Periventricular nodule heterotopia is a condition in which nerve cells (neurons) do not migrate properly during the early development of the fetal brain. It is often related to chromosome 5.
Faith has a Neurologist, Hematologist and Cardiologist that monitor and take wonderful care of her. Over the past seven years, we have had some very trying times and scary moments, but in the end, Faith has remained strong. She has endured many tests, lots of hospital stays, and she takes medicine twice a day. She knows life in no other way.
Faith’s condition is instilled in her: she has no FMLA signs, and further blood testings will be taking place very soon. The only doctor in the U.S. researching her condition resides in Boston, MA.
Faith is my hero and she is the bravest person I know. She is loved beyond belief!!!!