I never in a million years thought my YouTube channel would help me research and find others like me.
Thanks to overwhelming support we have found common elements in multiple cases that maybe able to save a life in the future.
After seeing medical reports from individuals with this rare type both alive and deceased there are common precursors in every case and common factors that affect survival rates for individuals.
There are also things that should be avoided and things that should be done immediately to save a life.
This started as a small idea to try and save my life and has grown into something much more. Without much knowledge, no funding and just a bit of good old fashioned graft we could now find a way to solve this puzzle for me and others like me.
Thank you everyone for everything so so much