We are creating a RARE ANGELS Tribute for our upcoming Utah Rare events on February 27th and 29th.
If you have a RARE ANGEL in your family or know of someone that has lost a child to a rare or undiagnosed disease, please ask them if they would be willing to share a photograph and a written summary about their RARE ANGEL.
We want to honor their lives and share their journey. We plan to have a balloon release during the Utah Rare events to honor all of the Rare Angels. If you want to be a part of the RARE ANGEL Tribute, please email a photo and a summary of your child to Gina Szajnuk.
Charlee Marcella Nelson passed away from Late Infantile Batten Disease on March 15, 2014. She passed away only two and a half months after turning six years old.