Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]
I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But I especially need to send a special hug to the one mom who has been there to pick me up these last […]
This week’s Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]
Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]
It’s said that everything happens for a reason. Someday you’ll look back on this and be thankful. You’ll be able to see what it’s taught you. When my daughter and I were first diagnosed with Platelet Storage Pool Disorder (PSPD), I had a hard time finding the good in anything amidst all the frightening doctor […]
The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I […]
I don’t think I’ll ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with Platelet Storage Pool Disorder (PSPD). It was 10:30 AM on a Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that […]
Today, HFA is pleased to introduce new blogger, Kari. Kari and her daughter have a rare bleeding disorder, Platelet Storage Pool Deficiency (PSPD). Continue reading as Kari introduces herself and shares more about her and her daughter’s diagnosis. Every morning when I wake up, the first thing that usually pops into my head is my […]
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