“This really was the hardest thing for me to do since we knew Hannah was sick.”
I wrote that on my LittleMissHannah.com blog in February 2009, when I first posted this video. Hannah was seven months old. She had just been diagnosed with Gaucher disease, and a geneticist had told us to “take her home and love her.”
I didn’t know what else to do to get the attention of people who might be able to help her, so I made a video and wrote it in her voice. I felt desperate. I sent the YouTube link to researchers and clinicians all over the world, to media outlets, and to anyone and everyone I knew. I asked them to watch it and pass it along, because I believed it might reach someone who knew something that could help her.
The rest of what I wrote that day was this: “At first it felt like I kept stabbing myself in the heart intentionally, but after a while, I just became numb to it. Once it was done, and I saw the final version on YouTube, I just lost it.” To this day, I never watched the video again.
Seventeen years later, I still can’t believe I was able to make it just weeks after her diagnosis. It did what I had hoped. It got Hannah’s story out, and people from every part of the rare disease world, families and researchers among them, started to pay attention.
It could not save her. Hannah died on December 4, 2011, when she was three. This is Gaucher Awareness Month, and when I hear “Gaucher type 2,” she is who I see, my feisty, adorable baby girl who smiled at everyone.
Families are living with type 2 and type 3 right now, and they are a small part of an already small community. Babies with type 2 are still dying of it. Attention helped us, but it was not enough to save Hannah, and it won’t be enough for them on its own. If you talk about Gaucher disease this month, please include them.
First published on LinkedIn, October 1, 2026.
These views are my own, written as a rare disease parent and advocate, and do not represent any employer or organization I work with.