Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic I’ve seen the comment threads on […]
Dear Addy, My son is starting kindergarten this fall and I’m concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]
“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]
My husband, Alan, and I often get asked, “How did you raise a child with hemophilia who is attempting to climb the highest mountain on every continent?” Most of the time we shake our heads and answer, “We have no idea.” Alan and I have two sons. Our oldest, Andy, does not have hemophilia, and […]
Families come in all shapes and sizes and it’s no surprise that those will special needs face a unique set of challenges. Raising my twin daughters while balancing the demands of various medical, neurological, and learning differences thrust me in to a endless game of special needs roulette. Predicting the outcome is impossible. Each of […]
[glossary_exclude] The recent addition of Dads in Action (DIA) to the Hemophilia Foundation of Northern California (HFNC) has been instrumental in encouraging our dads to connect, participate and learn from each other. While we worried how successful we would be (Would dads who didn’t know each other open up, share, or even show?!), we were […]
We have all heard the clichés about needing a manual for parenting but one doesn’t exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]
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