Supporting Boston Children’s -- Nora's Story

Nora Rose’s Story

This is our daughter, Nora Rose. She is 1 in 12,000.

At just a few weeks old, Nora was diagnosed with biliary atresia, a rare and life-threatening liver disease. She has already endured major surgery—the Kasai procedure—to give her a fighting chance. The Kasai is not a cure. For Nora, and for most children with this diagnosis, a liver transplant will one day be her only option.

We are still not over the hump. Every day brings new hurdles, new questions, and the reality that this is only the beginning of a very long road. After listening to other families walking this same path, we now know just how long and difficult this journey will be.

We want to raise money for the organization and institution that has helped us so much through this process, to provide compassionate, family-centered care to every child, regardless of their circumstances or ability to pay.

Having your child in the ICU is something you never expect to experience and don't know until you are the parent—it is heartbreaking, humbling, and life-altering. But through it all, Nora is teaching us what resilience looks like. She is small, but she is mighty.

And then there are the moments that remind us how extraordinary this hospital is. Nora’s surgeon came in on his day off—in regular clothes, not scrubs—just to check on his patient because he cares. One of the nurses turned to me with tears in her eyes and said, “This is why Children’s is different.”

We’ve come to realize that you don’t truly know how lucky you are to live where you do until something like this happens. We are lucky to be in Boston, with access to Boston Children’s Hospital, one of the best hospitals in the world. The team here has given Nora a chance.

This page is not just about Nora. It’s about recognizing the extraordinary place that is Children’s, and the families like ours who rely on it every single day. Not just for Biliary Atresia but so many other rare diseases. By giving, you are helping us show Children's how grateful we are and give back to the hospital that is giving our daughter—and so many others—a chance at life.

The road ahead is long, but science, love and community are powerful. And with all of those, Nora has a fighting chance. Thank you for standing with us, and with Boston Children’s.