“Hey, there’s Amy ‘My Face is Exploding’ Young!” That’s what some classmates called Amy Young-Ames Reay during her senior year of high school when enormous bumps grew on her face out of nowhere. Amy laughed it off because she grew up in a household full of teasing, sarcasm and jokes, and knew the kids meant no harm. But at the same time, her face was in excruciating pain and the bumps sometimes burst which everyone thought was disgusting. The doctor said it was cystic acne though she later learned those were her first tumors in her nerve endings.
After high school, Amy had a series of tumors develop and had them removed surgically but was given no explanation. When she was 21, she began having debilitating migraines and balance issues which led to finding her first brain tumor. After it was surgically removed (leaving her deaf in her right ear) and ruled an acoustic neuroma, Amy still was not diagnosed and was scared of the unknown. “What was happening to me?” she wondered.
A few uneventful years followed and then it was like a storm hit. So many symptoms developed. MRIs found bilateral acoustic neuromas and a spine full of tumors. Amy landed in Boston and was finally diagnosed with Neurofibromatosis type 2 at age 29. Another brain surgery then spine surgery, leg surgery, neck surgery, shoulder surgery. At this point, she has lost count. Two more acoustic neuromas came back so they tried gamma knife radiation twice hoping to save her hearing, but that failed. Fast forward to today: Amy is deaf, has 7 existing brain tumors, 14 spine tumors and more peripheral tumors than she can even count. She has a cochlear implant for sound though there is not enough clarity to understand spoken words. Amy lives with nerve pain every day, frequent headaches, balance issues and deafness.
But, she is also happy and living a wonderful life. Amy says she is surrounded by many people that she loves that love her right back. She never has to fight this alone. She has her Hearing Dog Delancy by her side always. She is grateful to be alive and thriving. Amy often says, “I may have NF2 but NF2 doesn’t have me.” If anything, Amy feels this illness has made her a better person, more grateful for the little things and with a keen understanding that life is short, be happy. She fights back against Neurofibromatosis by being an avid supporter and participant in Cupid’s Undie Run. She and her team have joined the Boston run and for two years in a row, have been the 3rd top fundraising team. She is personally the #2 fundraiser for Boston and is so proud of that! It’s important to her that she has a good time while making a difference. Cupid’s personifies everything Amy is about....”I want to be known as a fighter but also someone who never forgets to laugh.” I’ve learned throughout my life that crying changes nothing. You have a choice: let illness destroy you or overcome, living your best life. I choose the latter.