Gracie’s Sandhoff Journey

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. 💜

09/20/2025

Happy National Day of Hope to the NTSAD!

NTSAD (National Tay-Sachs and Allied Diseases) is a nonprofit organization that provides support, education, and advocacy for individuals and families affected by rare, genetic neurodegenerative diseases, including:
• Tay-Sachs disease
• Sandhoff disease ** (Gracie)
• GM1 gangliosidosis
• Canavan disease

They lead the worldwide fight to treat and cure these diseases by driving research, forging collaboration, and fostering community.

The Day of Hope supports NTSAD’s Research Initiative and family support. Since its inception in 2002, NTSAD’s Research Initiative has awarded more than 75 grants and provided more than $5.1 million in funding. The data generated in some of these projects funded by NTSAD grant opportunities were leveraged to obtain future funding from larger National Institutes of Health (NIH) grants, resulting in over $30 million toward finding cures.

This group has brought us so much comfort during our time with Gracie, and the families have held our hands the entire journey. We have met some incredible people, and incredible children. Today we are celebrating the day of hope for our daughter Gracie, and all the other kids currently battling or lost to this disease including our dear friends:

Aiden
Cayden
Embree
Josie
Greyson
Niam
Calvin
Daphne
Levi
Tobin
Eli
Adley
Phillip
Felix
Harper

If you feel inclined to donate to help find a cure for these diseases, you can click this link. You can also wear your rare T shirts, move a mile, or do something kind for someone. Thanks!


https://ntsad.org/donate-to-ntsad/

09/16/2025

In honor of Gracie, You can join us in Moving a Mile for Hope on September 20. Post a picture on social media of you walking, running, dancing and use the hashtag
, and tag .

Mark your calendars to Move a Mile for Hope for our 15th Annual Day of Hope on Saturday, September 20, 2025! It’s easy. You can walk, drive, stroll, roll, or even dance around your neighborhood. Grab your family and friends to join you. Don’t forget to snap a photo and post on social as we raise awareness and funds for support and research. Donate today at NTSAD.org!

08/28/2025

Gracie’s funeral flowers pressed by Serendipity By Sami

08/02/2025

Today, Gracie’s dad planted everything in her garden. When I came to check it out, a monarch (the first one we have seen since starting her garden) encircled me 🤍 Gracie is here, and she is proud 🥰🥰🥰

07/26/2025

Yesterday we laid our sweet girl to rest. It was absolutely beautiful! Thank you to all who made it, and all who respected our privacy in order to keep it small. Gracie is resting peacefully in the cemetery in Pulaski, a three minute drive from our house. Her stone will be ready in late august!

07/22/2025

Gracie’s Garden - Day 1 🦋

07/21/2025

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Gracelyn Wilcox April 29, 2024 - July 19, 2025 Sign Guestbook Gracelyn Hazel Wilcox, who was named for the goodness of God, went home to heaven on July 19, 2025. She was born on April 29th, 2024, in Green Bay, WI. Gracie suffered with an extremely rare genetic condition called Sandhoff Disease and t...