Introducción Mi especialidad empezó en 1927 como huérfana. Sin tener ninguna relación con nada conocido hasta entonces y sin conexiones a una comunidad mas amplia, lo que siguieron son 60 anos de abandono. En 1985, una valiente familia decidió que...
Stories
In 1983, Oregon parents Lynn and David Frohnmayer learned their two daughters, Kirsten and Katie, had Fanconi anemia (FA), a rare genetic disorder that leads to bone marrow failure, leukemia, and cancer. They would later find out that their third...
Stories
My name is Mary-Beth Johnson. I’m 26 and I have Fanconi anemia. I climb mountains, make avocado roses, and I spend a lot of money at Target when I’m stressed. I don’t generally identify as someone who is sick, because...
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Where were you the day your life changed forever? Do you remember how you felt the moment you knew nothing would ever be the same again? Sean, Maya, and Allison Breininger Sean was in his early 30s, married to his...
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Sibling relationships can be the longest, strongest and at times the most complex relationships in a family. During the formative years, siblings share life’s journey and all it brings. What is it like to be the sibling of someone with...
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Our son is significantly smaller than his same-age peers. We know that this will become more of an issue for him socially as he gets older. Any advice? The more you accept yourself, the more others will accept you. We...
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