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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Rachel Altmann
Board Member
Mother of Nina
Rachel has been active in the Fanconi anemia community for several years, as an FA parent, a contributor to FARF newsletters, and a fundraiser. She has worked in the education sector for many years, as an environmental educator at Hawai’i Nature Center and most recently as Library Outreach Specialist at Multnomah County Library in Portland, Ore. Her daughter, Nina, succumbed to complications from Fanconi anemia in 2006 at age three. Rachel continues to honor Nina’s legacy by working to advance FA research and support other families who face FA.
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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....