Stories about: hemophilia

From frustration to freedom: My journey with hemophilia A

Donovan Guerrero is thriving with hemophilia thanks to a clinical trial

I was diagnosed with hemophilia A at 4 days old. My parents had no idea what it was, but they discovered that my mom was a carrier. They brought me to the Boston Hemophilia Center. It helped them to learn about hemophilia together with other families going through the same thing.

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A valentine for Robbie

Family raising two boys - one with hemophilia and one without

Your smile is infectious — a picture of joy.

Clearly, you’re not a typical 3-year-old boy.

Whether cooking with Mommy, shooting hoops with Daddy,

climbing on Eddie or messing with Atty;

you find the fun in everything you do.

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Kayla, Joel and Robbie’s story: Taking life with hemophilia one day at a time

joel hemophiliaHemophilia has always been part of Kayla Klein’s life. Her father, David, had the condition. Her son, 6-month-old Robbie (that’s him above), has it too.

For years, though, Kayla has also surrounded herself with the right people—people who know hemophilia and who have helped her and her husband Joel create a life where the condition isn’t something that happened to them. Rather, it’s part of their family’s normal. And they’re determined to make sure that it will never keep little Robbie—or them—down.

A life embedded in hemophilia

David died when Kayla was just shy of two. But it wasn’t from his hemophilia. Rather, like so many others in the 1980s and 90s, he died because the blood products he took to keep the disease under control were contaminated with HIV.

Hemophilia remained a lurking presence in her life growing up, but started coming to the foreground when she and Joel married. Because Kayla carries the hemophilia mutation in her genes, they knew there was a 50/50 chance that if they had a son he would have the condition himself.

When the couple started asking questions about hemophilia and family planning, a colleague of Kayla’s introduced them to Lori Dobson, a genetic counselor at Brigham and Women’s Hospital.

Ultimately, after working with Dobson to understand their options, Kayla and Joel decided to just go for it.

“We realized that we could do lots of things and not have a baby with hemophilia, but could still have a baby with something else,” Kayla recalls. “We decided to just go ahead and see what happened.”

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