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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Mary-Beth Johnson
Member
Mary-Beth is a 27-year-old private chef based in Chicago. She works as a private chef and shares her culinary creations with the world through her blog, Heart of Celebration. A talented writer and speaker, Mary-Beth has spoken at FARF fundraisers, meetings and scientific symposia. She brings an authentic and unique perspective to what it means to live with FA in today’s world and has openly shared her story with the FA community.
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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....