Special Programs

It truly takes a village when you have a child, but having a special needs child... It takes a whole damn city.

We also found programs out there that we probably would have never heard about. I thought I would do a page to spotlight some of the programs and organizations who we have found and that have been an absolute support line for us.

I'll keep this page updated as we find more programs and items that help us out. If you have any programs you'd like me to add, please feel free to contact us!

NTSAD- National Tay-Sachs and Allied Diseases

*Click the photo to go to NTSAD website*

NTSAD has been our support group since day 1. They have a facebook page for parents and families of children who are affected and these families have kept us above water. They are so brave, kind, and welcoming. They have been so helpful for us in finding a lot of these programs.

Tiny Superheros - TSH

*Click the photo to go to their website*

Tiny Superheros is an amazing program for any child *and their siblings* to realize how special, strong, brave, and courageous they are no matter what they are facing, It starts by crowdfunding for a cape and then each month there are missions that you can complete to earn free patches OR you can purchase special patches. Greyson's cape is now pretty full and it's such an amazing program.

BBrave Foundation

*Click photo to visit website*

BBrave Foundation is founded by another Tay-Sachs family. Sara and Sam Scaparotti created BBrave to honor their son Joey. The provide funds for families to cover bills, self-care, emergency funds, and provide so much more support for families in every stage.

Lightz of Hope

*Click photo to visit their website*

Lightz of Hope was founded by another rare family because of their wonderful son Zachary. Zachary loved lights and wanted to share them with other children battling illness or disabilities. This is Greyson's FAVORITE thing right now! They have been so supportive of our family and we are so thankful we found them!

Luke's Fastbreaks

*Click photo to go to website*

Luke's fastbreak is a newer program we found. They provide hospital shirts for children that are more comfortable than hospital gowns. They are fun, bright colors, with fun designs to make the children feel better than a hospital gown. They also provided us a beautiful SOFT blanket, some grippy socks, and other fun things for a hopsital stay! The shirts they provide button up the sides and arms to allow easy access for medical staff and tubes/wires, but also allow for mixing and matching of front and backs of shirts! It's so fun!

Equipment we love- and more!!

Click this photo to go back to the original blog post that shares our favorite equipment and other programs. If you are also in Wisconsin, I shared some of our favorite state specific programs. If you are outside of Wisconsin, your state may have something similar!