The story of Julia
Anna May was a high functioning senior preparing for college, working at TJ MAXX and playing on the school tennis team. In January 2014 life as we knew it completely changed. Anna was diagnosed with Moyamoya, a rare brain disorder that causes the arteries of the brain to become blocked and eventually die. This can eventually cause a catastrophic stroke Anna had 4 small strokes before she was diagnosed. She began to have sudden muscle weakness, could not walk, could not stop twitching. Her eyesight changed and became blacked out at times and her hand would cramp in a claw like way. Anna’s brain had found an alternate route to get the blood and oxygen where it needed to go. That network was no longer working and she needed immediate blood flow. Anna had a MCA-STA revacularization surgery on both sides of her brain in February 2014. She spent her 18th birthday in Stanford Medical Center in California 3000 miles from home. But not this year!!!! This February 29 is Leap Year and Rare Disease Day and Anna May’s 20th Birthday..
Meet other people living with Moyamoya disease on RareConnect:
https://www.rareconnect.org/en/community/moyamoya-disease