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About me

Introduction	Trained in Biochemistry, Theology and Bioethics, I work as a patient and family advocate with research interests in bioethics and Family-Centered Medicine. I am the mother of two children: Eithene Rose and Gabriel, and the wife of Sean. . Our daughter Eithene was born with two genetic disorders: Mitochondrial Disease (Complex IV), and Ehlers-Danlos Syndrome, as well as the serious birth defect condition, VACTERL Association . She lived half of her life at our children's hospital, but endured with resilience, courage, and a sweet but feisty spirit. She left this world and walked into Glory on July 8th, 2011; three weeks shy of her 5th birthday. We will love and miss her forever. . Our son Gabriel is extremely active, and loves to cuddle. He has an Austism Spectrum Disorder, as well as Ehlers-Danlos Syndrome and Mitochondrial Disease. His issues are much less severe than our daughter's and we strive to make life as normal as possible for him. . As we walk through days of joy and suffering, we affirm that one thing is always true. God is good, and he loves us deeply. To Him alone be the glory!

Introduction

Trained in Biochemistry, Theology and Bioethics, I work as a patient and family advocate with research interests in bioethics and Family-Centered Medicine. I am the mother of two children: Eithene Rose and Gabriel, and the wife of Sean. . Our daughter Eithene was born with two genetic disorders: Mitochondrial Disease (Complex IV), and Ehlers-Danlos Syndrome, as well as the serious birth defect condition, VACTERL Association . She lived half of her life at our children's hospital, but endured with resilience, courage, and a sweet but feisty spirit. She left this world and walked into Glory on July 8th, 2011; three weeks shy of her 5th birthday. We will love and miss her forever. . Our son Gabriel is extremely active, and loves to cuddle. He has an Austism Spectrum Disorder, as well as Ehlers-Danlos Syndrome and Mitochondrial Disease. His issues are much less severe than our daughter's and we strive to make life as normal as possible for him. . As we walk through days of joy and suffering, we affirm that one thing is always true. God is good, and he loves us deeply. To Him alone be the glory!