07/25/2026
Today our daughter, affectionately loved as Little Miss Hannah, would have turned eighteen.
She was born on July 25, 2008, and we lost her on December 4, 2011, at three years, four months, and nine days old. She lived her whole short life with Gaucher disease type 2.
Almost fifteen years ago, I gave the eulogy at her service and made her a promise that we would keep fighting in her name. Near the end of it, I said this to her:
"Because of you, other families will be empowered to fight for their children. Because of you, doctors will have more compassion and resources when working with children with rare diseases. Because of you, communities will come together for reasons they never did before."
Here is something I tell people all the time. As parents, we spend our lives raising our children to have the skills to become productive members of society. That is the job. When you lose a child, that job does not go away. You just go about it a different way.
That is what I have done since. But on her birthday, I want to be clear about something, because it matters to me that people understand it. None of what came after happened because of me. It happened because of her.
Because Hannah was here, my husband, my children (Ethan and Abigail), and I built a foundation that served hundreds of Southern Nevada families raising medically complex and rare children, and we ran it for thirteen years. Because of her, I spent more than a decade helping other advocates and patient group leaders, hundreds of them, across every kind of rare disease you can think of. Because of her, I have sat in rooms full of doctors and researchers and made the case, again and again, for children like her, the ones today's medicine cannot save yet.
In that same eulogy, I told her: "What you have done in three short years, most people, including myself, could never do in a lifetime." I believe that even more now. She opened people's eyes, from physicians to strangers, the way only she could.
Hannah is still a productive member of society. I am just the one doing the legwork, building the legacy she earned, in her name, every single time.
Happy birthday, my beautiful girl. Look at what you started.
This was the tribute I gave to Hannah at her service. Of course, it is easier to post it here than it was to deliver it. I’m not sure how much those that were there heard because it was so …
