When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
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Stella Davies
Board Member | MBBS, PhD, MRCP
As director of the Division of Bone Marrow Transplantation and Immune Deficiency at the Cincinnati Children’s Hospital, Dr. Davies has helped pioneer significant advances in bone marrow transplantation to improve survival rates and reduce toxicity. She has led efforts to sustain and improve an already-strong clinical center of excellence for the care of Fanconi patients and their families. She has also played a key role at Cincinnati in fostering and supporting strong clinical and basic science focused on Fanconi anemia. She is an active and vocal participant in the FA scientific community and brings her intellect, energy, and enthusiasm to the fight against Fanconi anemia.
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The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.
By Cecilia Córdoba, mother of Agustina Milagros Kaucic When my daughter Agustina was 2 and a half years old, our lives changed forever. It was very difficult to reach a diagnosis. And when we finally received it, it was devastating....