Hi, my name is Laci Tincher. Moebius Syndrome Awareness Day is very important to me because my daughter, Olivia Hale was born with this syndrome. Olivia is 9yrs old and attends the third grade at White Oak Intermediate School. This past MSAD, Olivia and I wanted to inform her classmates and help spread the word on Moebius Syndrome.
First, I started by calling her teacher and telling her all about how this was going to be the Second Annual MSAD and that is was going to take place world wide, with people holding their own events. I then asked her if Olivia could have a special time on that up coming January 24 to tell her class about Moebius Syndrome? The teacher thought is was a wonderful idea and then asked if Olivia would speak to the whole third grade, teachers, and other staff members of the school. When Olivia got home from school that day, I asked her about it. She immediately said yes and was very excited to get this opportunity.
From this point on, MSAD planning got bigger and bigger! With the help of a teacher at school, we were able to send home purple flyers that encouraged everyone from student to teacher to wear purple on Jan.24 to show there support for Olivia and others who have Moebius Syndrome. Since this was going to be huge event with many people attending we were able to use the school gym to host our MSAD. I also asked the school if I could use there lap top on a cart, and a huge screen to be able to let people view a video. They also helped by providing Olivia and I with microphones and a sound system. Then we started trying to come up with other ideas we could use on this special day. Olivia wanted to give something to everyone who attended. So I found a company online and got purple bracelets for all. They read “MSAD Jan.24” on one side, and “Our Smile Comes From Our Heart” on the other side. I also got some other ideas from the Many Faces Of Moebius Syndrome website and a picture I saw of Tim Smith wearing his official MSAD t-shirt. Olivia and I bought shirts and recreated the picture Tim had taken to advertise it on face book. We then enlarged the picture of us to an 8 x10 and put it on a poster board that read in big purple glitter letters, Moebius Syndrome Awareness Day Jan.24. I then attached a little container that held the Moebius Syndrome brochures that I printed from the foundations website. We used this poster board on an easel during the program and then left it in the office at school for anyone to take a brochure.
As the day got closer I then emailed the schools year book staff to encourage them to write an article in the year book to further help us spread awareness. From there the year book staff forwards the email on to the local community newspaper, to let them know.
Soon the day arrived, Jan.24 2012all of the students, teachers, friends, family, and even her pediatrician gathered in the school gym. Everyone was wearing purple to show there support. Olivia and I, plus all her grandparents were wearing our official MSAD shirts. We were all ready to get this started, even the year book staff came and the local newspaper showed up.
We started with me welcoming everyone and letting them know why this MSAD was very important to help spread the awareness about this extremely rare neurological disorder. I then explained what Moebius Syndrome is and how it affects the sixth and seventh cranial nerves. I also told them that the other twelve cranial nerves could be affected, and the additional conditions they may include. From there I went into the causes and treatments for Moebius Syndrome. After informing them on all the details, I told them that most people with Moebius Syndrome have normal intelligence. Others should take care not to confuse their lack of facial expression with dullness or unfriendliness. When in reality they are wearing their smiles broadly across their heart. Then I tried to bring it down to a third grade level and told them, we have all heard our teachers say, not to judge a book by its cover. And that we can take the same saying about other people. Just because someone may look different doesn’t mean we don’t enjoy the same things. In reality they are just like you and me. They love everyday things, spending time with friends, sports, dancing, video games, and going to school.
After I said my part Olivia got up and shared her life experiences. From being born with moebius to her struggles, therapies, surgeries, and day to day living. She also talked about her many accomplishments. She ended her speech by telling everyone about all of the things she enjoys doing just like regular people do, but the only difference is that her smile comes from inside “my heart”.
After both of our speeches were finished we played the Moebius Syndrome holiday heroes for everyone to view. I encouraged them to see through the video that they enjoy fun things like them. After the video we closed by thanking everyone for attending and letting us speak. We then handed out the MSAD bracelets we ordered.
MSAD was a great success for us. There were 120 kids plus teachers and family/friends that came. The year book will be writing an article for the 2011-2012 year book. The local newspaper also did an article on Olivia. All in all were able to spread the word to more people then we ever thought we could. A few weeks later we were invited to a friend’s ladies church luncheon and gave our speeches again!
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