What this Mom Wants You to Know About Hemophilia

Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does?

Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives of her family forever. Instead of dreaming of future weddings and graduations, Bender wondered if she’d be planning her baby’s funeral.

Thankfully, her daughter Rose, has done exceptionally well. She’s in college now and is very involved in community endeavors and her social life. She loves Thai food, her sorority sisters, and makes her way to class by scootering around campus.

And THOSE are the things her mom wants you to know about Rose. Not that she has hemophilia or all that she’s been through because of it, but that she’s been able to live a “normal” life, despite hemophila.

Bender recalls what it was like to raise Rose and wants other parents out there to know they don’t need to include the disclaimer: “I know it’s not anything compared to what you went through with Rose, but…” Bender says to stop that.

Just because Rose has hemophilia doesn’t mean she didn’t throw fits, play with toys, and have to learn the same things we all do.

So for future reference, don’t compare your “normal” kids to others with chronic conditions. Parenting is tough. Period. That’s why we all have to stick together!

Winnie Nash

Winnie Nash

Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.

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