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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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...
Stories
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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Our only child, Marina, is a lovely, sweet girl who loves going to the beach and riding bicycles (especially at her grandparents’ farm). She is 11 years old and we are so thankful she is doing well. Just after her...
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Caregiver Position Description Position Summary: The Caregiver cares for the patient’s medical, physical, emotional, spiritual, mental, social-emotional, financial, organizational, and dietary needs. Reporting to: This position reports to the patient, medical staff, the patient’s mother, other family members, friends, acquaintances, and the...
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