The story of Verity
I was diagnosed with MNGIE in 2016 after having been previously told that there was a “99.9% certainty” that I had Crohn’s disease. Finding out that I had a condition that has less than 200 cases worldwide was quite alarming and I instantly wanted to know what could be done to help. Learning that there were no real options available was heartbreaking.
Thus began a period of learning to accept and manage my condition, adapting my daily life to help preserve the muscle mass that I had. Sadly, over the next few years both my sisters were found to also have MNGIE. In January of 2021 my eldest sister, Gail, succumbed to this disease, demonstrating how unmerciful and cruel this condition is.
This led my family and I to pursue whatever possible in the hope that myself and my remaining sister, Zillah, might be able to avoid this fate. This has led us on a crowdfunding journey to try to raise vital funds for compassionate treatment that may help me see my darling son grow up. A dream I am sure every parent can relate to. This journey is only just beginning but the kindness and compassion of strangers has been overwhelming. The messages of support I have received have been awe-inspiring and I am proud to finally tell the world that I am Rare!
#crowdfundforv #MNGIE #mngieawareness