Gracie’s Sandhoff Journey

04/20/2026

Gracie’s flowers are all planted, we’ll see how this goes..! Zinnias, cosmos, dahlias, nasturtiums, and wildflower random mix. A few weeks til they move outside yet of course.
🌼 🌺 🌹 💐 🌸🌻🌷🪻

I’ll put the pots out in the garden this year instead of planting the flowers directly in the ground. My father in law is making me a raised garden bed as well for veggies. G’s garden is expanding! (Provided my thumb is as green as I’m hoping)

Next week is Gracie’s birthday! 🎂 I’ll be spending the later half of the week in Virginia attending the NTSAD (National Tay Sachs and allied disease) annual conference!

04/11/2026

This beautiful weather means it’s time to get Gracie’s Garden back up and running! Stay tuned 🤍🤍👀

01/19/2026

TWO posts of G-baby in one weekend? You guys are spoiled! 🤍 03/22/25

01/18/2026

A random picture of the most iconic queen, sweet G! 💋🕶️👑

June 1, 2025

12/26/2025

Merry Christmas from the Wilcox 4 🤍

12/20/2025

Here’s some sweet G for your morning! 🥰 taken June 25, 2025.

11/29/2025

11/20/2025

I always want so badly for people to ask about her. What she was like, what she loved, what her life looked like. People feel awkward and don’t want to talk about her out of fear of upsetting us, but they don’t realize she is my favorite topic, and I’m always looking for ways to bring her up. 🦋

💜🦋

10/15/2025

Please light a candle for G at 7pm tonight 🥰

10/11/2025

It’s here! We absolutely love it. Thank you so much to Bud at Schlaefer-Martin memorials for working with us the past several months to make it perfect.

10/08/2025

✈️ I’m thrilled to share that I’ll be attending the 2026 NTSAD Annual Family Conference this April in Reston, Virginia!

This will be my first NTSAD conference—and my first time traveling solo—which makes it especially meaningful. I’m so looking forward to finally meeting many of the incredible NTSAD families I’ve come to know virtually.

The conference offers an invaluable opportunity to expand knowledge of these rare diseases through sessions on the latest research, clinical trials, and symptom management strategies. Rare disease advocacy is deeply important to me, and continuing education like this is a crucial step toward advancing research, improving care, and ultimately finding potential cures.

Even more special, the conference begins on Gracie’s birthday—a powerful reminder of why this work and this community mean so much to me. It feels like a beautiful way to honor her life and legacy surrounded by people who truly understand.

I can’t wait to connect with these extraordinary families and meet the incredible children who are just like Gracie. 💜