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Raising sons with hemophilia is like being a blacksmith forging a sword. The blacksmith shapes a piece of metal that needs careful, skilled effort to become a sharp and strong sword. Each blow of the hammer represents the challenges brought by a bleeding disorder. The process is arduous and…

The past two weeks have been a whirlwind of activity for me, highlighted by two significant events. First, I attended an event in Washington, D.C., called “Voices of Hemophilia,” which was sponsored by the biotech company CSL Behring. This small but powerful gathering brought together eight leading voices from…

For years, long periods in the hospital proved challenging for my family. My youngest son, Caeleb, required many extended stays because of breakthrough bleeding episodes related to hemophilia. We often tried to find ways to break the monotony of the sounds of medical machinery that frequently rang and…

My sons, Julian and Caeleb, are adults living with hemophilia. Julian is 28 years old, and Caeleb is 18. Having adult children is a new phase of life for me. While Julian is out on his own chasing the next audition, Caeleb is preparing to begin…

I think about my daughter’s future a lot, especially now that she’s getting older. At 5 and a half, she’s just finished senior nursery and is headed for big school in a month. She’s skinny and nimble, having lost most of her baby fat except for her cheeks. She loves…

Saying no has always been a challenge for me. I tend to overcommit, take on too many tasks, and then feel resentful toward the people or activities I didn’t want to engage with in the first place. For instance, I’m now on my condo board because I couldn’t say no…

My youngest son, Caeleb, and I recently visited the Ted R. Montoya Hemophilia Treatment Center (HTC) for his yearly checkup. This appointment was his first to the treatment center since turning the magic age of 18. Before leaving the house, we discussed what he should expect as a newly…

I love sitting by a campfire. Stories and laughter are shared, s’mores and hot dogs are roasted, and memories are made. Tending the fire to keep the flames burning requires constant attention, and it takes my mind off my troubles. Watching the flames leap and dance is mesmerizing. However, the…

I first met Kim Phelan, chief operating officer of The Coalition for Hemophilia B, in person at a recent symposium in Dallas. From the moment we spoke, I was in awe of her. Despite the hundreds of attendees, she took the time to engage with me personally.

Lately I’ve been pondering how to achieve long-term happiness and fulfillment while managing finances and chronic illnesses. My husband, Jared, battles hemophilia B and seizures while I manage attention-deficit/hyperactivity disorder and bipolar II disorder. Receiving Jared’s medication through humanitarian aid is a blessing, yet its consistency isn’t…