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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Michael Scott
Finance Manager
Mike grew up in San Francisco and received his bachelor’s degree in accounting from San Francisco State University. As a child, he spent his summer vacations at the family ranch in Wyoming, where he developed a love for fishing and motorcycles. After moving to Santa Cruz, Mike worked for a large nonprofit for many years while cultivating his passion for surfing and racing motorcycles. Moving to Oregon with his two dogs, Lucky and Peanut, Mike has achieved his lifelong dream of building his motorcycle track and pursuing his love of surfing and the outdoors.
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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....