Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the […]
The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]
It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan’s holder and I could never transition him to the other side of the needle. I don’t think I wanted him to do it either, since […]
At HFA, we have a core tenant and motto of our organization. It is “Lest We Forget.” In my family’s view, raising a child with a bleeding disorder in today’s world means we have the responsibility of determining when and how we help our children to learn and understand the history of our community. […]
I adore the “On This Day” feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]
“I don’t have a bleeding disorder,” said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). “I know you don’t have a bleeding disorder, but they are allowing siblings to attend. […]
I have always felt my brother’s presence in my life. He was born in May of 1962. There are no pictures of him or any stories about him. He only lived for five days. I was born, 6 years later, in October of 1968. I remember going to the cemetery to visit the family graves […]
I was starting to get Ryan, my youngest, ready for bed while Logan hovered around us. Logan loves Ryan, and wants to be near him always. It is incredibly sweet. But on this particular day Logan was paying close attention to Ryan, and after a few moments Logan casually asked, “When does Baby Ryan get […]
My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a ‘normal’ life. […]
Dear Addy, I have two sons with hemophilia and one daughter who is not affected by a bleeding disorder. My two sons get so much attention and I know that my daughter feels left out. How can I help my daughter understand that we love her just as much as her brothers? Signed, Dad of […]
I hear the term “Nature vs. Nurture” often and sometimes hear about studies or watch TV specials with identical twins switched at birth and how alike they still are. Their temperaments, likes and dislikes, even their career paths surprisingly often fall into similar categories. That’s not the case with my twin daughters. Even during pregnancy […]
I grew up an only child raised by my grandparents, so I never had the sibling experience of arguing and fighting with another child in the house. As a mom, that battle between siblings and the idea of sibling rivalry has been a foreign concept to me. Sure, there were periods of my life when […]
By Cazandra Campos-MacDonald One thing I’ve learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water. I’ve learned that you never know when your experience will ring true with someone else and make them feel less alone. That […]
As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. But […]
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