Our son Blake is 14 years old and eight years post bone marrow transplant. While we celebrate milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.
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Ana Alejandra Tabar
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Ana Alejandra Tabar is 34 years old and currently lives in New Jersey, though she grew up in the Dominican Republic. In 1999, her oldest brother was diagnosed with Fanconi anemia, prompting Ana to be tested and subsequently diagnosed as well. Sadly, her brother passed away in 2000 from leukemia. He inspired Ana and her family to establish “Un Corazón por Fanconi,” a foundation focused on developing a diagnostic protocol for FA patients and spreading awareness about FA in the Dominican Republic. Ana works as a graphic designer and loves art, warm weather, the beach, and spending time with her family.
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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.
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.