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Infusing Love: Out of the Mouths of Babes

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

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Conquering Mountains

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two strong, […]

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Infusing Love: My Blood Gang

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

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Infusing Love: Isolated No More

Until recently my husband and I didn’t realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn’t have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]

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Infusing Love: I Get To Decide

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children’s feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan’s sweet personality, but […]

Colorado Dad Continues Advocacy Involvement

Nathan Wilkes has been advocating for his son, Thomas, who has hemophilia and an inhibitor for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

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Infusing Love: No Promises

What is the last thing you say to your child before they leave the house? Maybe it is “I love you.” “Be careful” is always toward the top of my list. Ideally, I’d like to hear “Yes ma’am,” or “I will” in response. Do I ever hear that?! No! Nick’s favorite response is “No promises.” […]

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Infusing Love: To Go or Not To Go

Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children’s Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]

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Infusing Love: Never Too Young To Advocate

For the past four years I have been participating in Hemophilia of South Carolina’s legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]

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Factor I Deficiency: A Voice for a Rare Community

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

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