Gracie’s Sandhoff Journey

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

🤍

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...

07/20/2025

On July 19, 2025, our sweet Gracelyn Hazel was gently carried into the arms of Jesus.
In just 15 months, she filled our world with more light, wonder, and love than we ever knew possible. Though her time with us was brief, her impact will last forever.

Josh and I were given the gift of spending her final days at home—holding her close, loving her fully, and treasuring each breath. She passed peacefully in our arms, and it was absolutely beautiful.

One week before her journey home, we captured these tender photos—now treasures beyond measure.

Thank you for surrounding our family with your prayers, love, and kindness. We feel every bit of it, and we carry it with us as we continue to honor our sweet Gracie’s life and legacy.

“A precious flower, lent not given,
To bud on earth and bloom in heaven.” 🌸

DeliramentDesigns

07/07/2025

Faith is the ability to trust in God’s plan, no matter what it may entail. God gave us Gracie, what beautiful evidence of his power and goodness🤍 Our unique testimony is proof of His love, and we feel closer to God than ever. We are hopeful Gracie’s story brings you to God as well, and that you witness our unwavering faith as a sign to point you His way.

07/05/2025

An all American girl! 🥰 every holiday with G is so special. We even got to see some fireworks!

07/03/2025

Perfect hot tub day! G is feeling relaxed😴