I was born on March 7, 1951 in Bethesda, Maryland at the National Naval Medical Center.   At that time, my dad was serving at the Pentagon as an officer in the U. S. Navy.  Our family resided in Falls Church, Virginia (a D. C. suburb) on and off for nine years while Pop served in different capacities at the Pentagon.

While growing up, we also resided in San Diego, California, Newport, Rhode Island, and Ottawa, Canada.  Military families move around quite a bit, and we were no exception.  To some degree this is tough on kids, but then you learn to adapt, accept changes, and learn about new places, etc.   So, in short, I felt that our nomadic lifestyle was beneficial rather than detrimental

I was diagnosed with Moebius Syndrome at age five.   I had plastic surgery performed at that age at the Naval Medical Center to place a surgical “sling” fashioned from my leg tissue which ran under my lower lip; this was done to correct my drooling problem.  Otherwise, I have had no other surgeries.  I’m also blessed to be in good health.

I do not recall feeling especially alone with respect to my having Moebius, or wondering if there were any other people “out there” with it.  I was basically a normal kid who was happy with the way he was.   Having said that, I don’t believe I would have elected to have smile surgery had it been available in the 1950’s or 1960’s!  I’m definitely not interested in it today.  After all, I’ve lived over half my life, and have no desire to alter my appearance.  Like Popeye said, “I yam what I yam” (or some such thing!).

However, I had issues with bullies and teasing!   I believe that’s something that I share with every other adult who has Moebius.   Undoubtedly, it was one of the worst aspects of the whole experience!   Some of those kids were so nasty and relentless!
When I was 14, Pop retired from the Navy and we relocated to Lafayette, Louisiana (near my paents’ small hometown).  I entered high school there, and went on to attend what is now the University of Louisiana at Lafayette, graduating in 1974.  In 1981, my employer at the time transferred me to the Houston corporate office.  Within a few years I had earned a masters’ degree at the University of Houston and had started working in the City of Houston Human Resources Department, where I am still employed.   I also married (and subsequently divorced) in that same period.

My sister Anne Broussard, a nursing professor, sent me an article from a nursing journal in 1995 which was essentially an advertisement for the Moebius Syndrome Foundation (MSF) and support network.  I was soon in touch with Vicki McCarrell (current president of the MSF) and began receiving their newsletter, speaking/communicating with others having Moebius, etc.  I attended my first Moebius conference in 1998 – it was truly an emotional, eye-opening experience!   I’ve attended each conference since, and co-chaired the 2003 conference held here in Texas.   I also serve on the MSF board.

Over the past 11 years or so I’ve made many wonderful friends in the Moebius community.  I feel as though we are family to an extent.   None of us really wants to have Moebius Syndrome, but since there’s nothing we can do to change that, we can certainly deal with the resulting issues and challenges.  That’s what the MSF and network are all about; to raise awareness about Moebius and to conduct scientific and medical research into its possible causes.

Tim Smith
Author: Tim Smith

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