Every Story Matters
Every Story Matters
Written by Lindsey Resto
Posted: December 12, 2025. This article was originally shared in our Winter 2025 Newsletter.
When I think back to my childhood summers on Martha’s Vineyard, I remember the entrance to my family’s restaurant, Lawry’s Seafood Market & Restaurant. Tucked into the corner was a wishing-well that occupied a quarter of the room. Its hum was constant as it circulated the water, and its base shimmered with coins: the tangible evidence of wishes made. Above it, my mother had written a simple sign that read: “All Donations Support Hemophilia Research.”
Back then, in the 1980s, hemophilia was rarely discussed, and public awareness was minimal. For our family, it was deeply personal. My father, now in his mid-seventies, has hemophilia, as do several of my cousins—and now, so does my oldest son.
Back then, I was also told by doctors that I was a carrier. Like so many girls of my generation, I was also told that I couldn’t possibly have hemophilia. “Only boys get it,” they said. “Girls carry it.” Today, we know this understanding is outdated. Research has confirmed that females can have hemophilia, and I plan to have both myself and our daughter tested.
In 2011, I met my husband, Carlos, and we got married soon after. He had never even heard of hemophilia until my father told him about the time he had all of his teeth extracted when he was a teenager in the 1960s. Needless to say, that oral surgery did not go as planned, but after 10 days at Mass General before Factor VIII infusions were even invented, my father came out the other side with a full set of dentures and a comprehensive medical record!
In 2014, I gave birth to twins–our son, Alex, and daughter, Liliana. Carlos and I were prepared for the possibility that Alex could inherit hemophilia, and he was tested at birth. The diagnosis came without surprise or fear. Because of our family history, we understood what to expect and how to manage it. In many ways, we were fortunate. When our second son, Cristián, was born less than two years later, we prepared for his potential diagnosis, but it never came. He was also tested at birth and he does not have hemophilia.
Alex’s case is considered mild to moderate. His primary symptoms have included frequent ongoing nosebleeds, hematomas from typical childhood play, and occasional joint swelling & stiffness. He doesn’t require daily infusions, and his treatment plan allows him to play the sports he loves— baseball and basketball—with few limitations. He wants to start running and has already signed up for the cross-country team this Fall. Alex also loves to read, play chess, solve Rubik’s cubes, sing, and play percussion.
We attended our first NEHA family event this past summer—a WooSox game—and were welcomed with open arms. It was a joyful reminder of the power of community and the importance of connection. It also reminded me why voices like ours—families managing hemophilia with fewer complications—are needed in this space. In a world where digital communication has replaced so much in person connection, it was refreshing and humbling to gather with such an incredible group of hemophilia warrior families.
At times, I’ve felt hesitant to share our experience. Compared to others in the bleeding disorders community, our journey has been relatively manageable. But I’ve come to understand that our story still matters. Advocacy isn’t only about the most severe cases. It’s about ensuring that all individuals and families living with hemophilia feel seen, supported, and informed.
There are many families like ours who stay quiet, believing their story isn’t “serious enough” to share. But mild or moderate doesn’t mean insignificant. Our children still face challenges. We still navigate precautions around injuries, surgeries, and joint health. And we still rely on continued research, education, and community support. If you’re a parent like me—grateful, managing, but sometimes unsure whether to speak up—please do. Every single story adds strength to this community. Advocacy depends on all of us.
Lindsey is mother of Alex & daughter of Harold. Alex Resto (age 10) is from Bellingham, MA and has Hemophilia A. Harold B. Lawry III (age 75) is from Martha’s Vineyard, MA and has Hemophilia A.