 Faith Foundation Mission
Our little girl Faith Autumn Tremblay was born on 2/14/03 with health conditions we were unaware of till June of 2005 when in a matter of 3 weeks her life and our whole world changed forever. Faith began having seizures in May and by the time she was diagnosed she was having over 140 seizures each day. Her rare brain disorder is called Periventricular Heterotopia. This disorder can only be detected by an MRI, and will not show till a child is over the age of 18 months; an MRI beforehand will read normal. It is a particular abnormality in the way the brain develops during pregnancy. Neurons failed to properly migrate outward to the brain surface as they were suppose to. Females diagnosed with this condition will appear normal but will have learning disabilities. Faith receives services in school for speech and OT. A few will have mental retardation. All will have seizures ranging from drop seizures, which Faith has along with focal seizures to full grand mauls. Faith is currently taking 2 seizures medicines to control them. They can also have problems outside of the brain, such as in the heart or blood vessels, either by a blood clotting disorder, which she has layden factor 5 or aneurysms in the aorta or the risk of a stroke increases. PNH can be a genetic problem either inherited or those that appear for the first time in the affected person. After testing Faiths condition was instilled within her, it began with her. PNH can also be caused by problems in the pregnancy, such as infections or lack of oxygen to the fetus. This condition is prenatal and neonatally lethal to most males, but we have found a few miracles. Most will die before they are born or within 5 months after birth. So the majority of affected individuals are females for that reason. Over the past 5 years Faith has had many stays in the hospital, she gets sick very easy because her immune system is low, and something simple to us is often quite difficult for her to fight off. Her last stay was in Sept 09 for a serious colon infection. She has had over 5 UTI’s, one that entered the blood stream and almost took her life. About 6 months ago we learned that her lower peripheral vision is slightly impaired, and will need to be monitored due to her seizures passing in front and behind both eyes. Lately she has been experiencing major headaches, grabbing onto her head and crying out randomly without any signs showing beforehand. She is also having lots of pain in her upper legs. She recently had an MRI/MRA done and will be having more tests done in the next two wks by her Cardiologist and Hematologist. At this time they are leaning towards a blood disorder complication. Dr. Christopher Walsh has the only lab researching her condition in the United States, which is based out of Boston. There knowledge of PH is expanding all the time but they still have many unanswered questions about this disorder.
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