Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Xavier's Story


This page is dedicated to my son, Xavier, and my mission to raise awareness and funds for a disease that is robbing him of his future. 

To date, over 37 gifts totaling $3,675 has come in to honor Xavier and support his dad's haircut! A picture of the final haircut is pending...

This is Xavier. He has a very rare and degenerative genetic disease called Sandhoff disease. He is an incredible little man who just turned four years old in November. Since we learned of his diagnosis, we have been making the best of it with the support of our family and friends. He is attending his second year at Silver Creek Preschool - a school that serves children with physical and developmental challenges. He has a wonderful time with his classmates, doing crafts, music and many other fun activities, which has been incredible for him and our whole family. (You can see some pictures of him at school in here: (



In addition to fundraising for Xavier's pre-school at Silver Creek Pre-school, we ask you to support NTSAD (National Tay-Sachs & Allied Diseases Association) with a gift here. They are a patient advocacy organization that focuses on rare genetic diseases like Sandhoff by providing family support services, funding research, raising and advocating for awareness.  

Please donate if you can. Share this page with all of your friends and families.

Donate Today

Be sure to leave Xavier a note in the comments section of the gift page or email me at This email address is being protected from spambots. You need JavaScript enabled to view it..

Watch this page and Xavier's Facebook page for news about the events I plan to have including cutting my hair!



Thank you so much for your support and standing with us as we celebrate my son every day.