Submitted by Betsie Huben
April 17, 2015 4:15 p.m.
I know a fighter.
Her name is Michele. She is both my colleague and my dear friend so I get to watch her duke it out everyday “up close and personal.” Sometimes she is in a slug fest for victory over intractable pain in the middle of the night.
So we meet up for coffee the next day and strategize living life with no sleep . At other times she wages war against the fear of further progression of her debilitating disorder. So we meet up and hug it out as hard as we can until we are sure all her broken pieces will stick together for at least another 24 hours until she can get in to see her doctors again.
And then there are those times where she battles hard against a multiplicity of issues including headaches, vision changes, persistent numbness, or weakness associated with the genetic disorder that tries to defeat her every day. On those days we meet up and pray, shout, run, cry, laugh or “whatever” we need to do to get her through.
I know a fighter.
Her name is Michele. She has Neurofibromatosis. NF encompasses three distinct and very rare genetic disorders that cause tumors to grow along various types of nerves. Like other very rare disorders, NF does not get the press attention or media exposure that other medical maladies do. With an occurrence rate of 1:40,000 it is astounding I would ever meet someone with this disorder here on our little island.
I know a fighter.
Her name is Michele. Together with her 50 million mega watt smile, her incessantly positive mental attitude and her creative blue and green get-up-and-go-for-it gear, she makes other fighters with her disease believe that that they can be victorious in their own battle when it is time for the bell signaling another round. My friend is such a dedicated fighter she is working like a true champion to end NF for others even when she cannot end it for herself. She has enlisted me in the fight to End NF.
I know a fighter.
Her name is Michele. She and a band of brave fighters hosted a first-ever Monte Carlo Night on Thursday evening, April 23, 2015 at the Omni’s Cumberland Ballroom. There was lots of FUN where you could learn more and help raise much needed research funds.
I know a fighter.
Her name is Michele. And she and many others need your help and support. If you have questions, want more information about NF or need assistance please feel free to call me at 919-333-0836.
To sponsor the event or purchase tickets, please click here.
I know a fighter.
Her name is Michele. Please come and meet her next Thursday and help her fight to end NF.