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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Brian Horrigan
Board Member | MA/ABD
Father of Delia
Brian Horrigan is Exhibits Curator at the Minnesota Historical Society, where he is responsible for major exhibits at the Minnesota History Center and historic sites around the state. His daughter, Delia Levine-Horrigan, was born in 1987 and diagnosed with FA at age 11. Since Delia’s diagnosis, Brian and his family has been actively involved in the FA family community. Since 2000, his family has fundraised for the Fund consistently and inspired other families to do the same.
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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....