Jessica
Blogs I follow
| 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! |
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