Updated: Jun 15, 2022
We have a new Chronic Warrior Collective Social Club member who is desperately looking to meet others with her rare genetic disease related to USP7. She'd be even more thrilled to find someone close to her age.
This is very near and dear to my heart and here’s why: one of our sweet angels, Daniella, was a very active member of our group. Her extremely rare genetic disorder was diagnosed when she was just 11 years old and, at that time, she was 1 of 7, I believe, in the world with this. She, very quickly, went from being a healthy, active child to having a heart transplant and, eventually, needing to be placed on a vent full time. In 2019, she met Emily. Emily had the same diagnosis, most of the same medical history, as well as many of the same interests and dark humor! Despite Emily living in New York and Daniella living in the U.K., they became fast friends. It meant the world to both of them to have met each other. Both Daniella and Emily have earned their angel wings but it warms my heart to know they found each other in this life.
Connecting with others that “get it” is so very important!
If you can help with this, please comment or message me. And, please share with anyone that might be able to help. Thank you! 💜