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MOEBIUS SYNDROME AWARENESS DAY 2020
We’re overwhelmed by all of the support shown around the world for MSAD. Our social media accounts were flooded with purple, and it was thrilling to see all of the love, support, and awareness being shared!
A special thanks to Addison Garvey and the Otsego Elementary School in Long Island, NY for turning their school purple and raising 1,350 for the Moebius Syndrome Foundation!
My name is Kiowana and I am a Sergeant First Class in the United States Army. My husband and I have a 10 year old son named Khaleb. He was diagnosed with Moebius syndrome at two months old. In 2008, Khaleb was trached for 3 years due to a choking incident in daycare.
Having Moebius syndrome, Khaleb has mostly been affected by not being able to smile or make facial expressions and having a speech delay. Also because of the syndrome, he was born with clubbed feet and has had his feet broken twice to correct them.
Khaleb is now in the 5th grade and enjoys sports, movies, bowling, singing, video games, reading, and dancing.
Having two parents in the military, Khaleb travels a lot and is always meeting new people. In 2014 we attended our first Moebius Syndrome Conference. Our goal in life is for Khaleb to be able to communicate comfortably with anyone and to be independent. We also want him to be able to learn and progress with his peers. Sometimes I feel that he is a little shy or may be afraid to communicate freely because he feels that someone won’t understand him. I want to teach him to be fearless, strong, and accomplish anything that his heart desires, just like his dad.
Khaleb smiles with his heart and laughs with his soul. If you are around him you can feel his love through his spirit. I know that he will be great at everything that he does in life. I published a book about Khaleb’s trials and tribulations with Moebius syndrome titled “The Boy Who Smiles With His Heart.” To follow Khaleb’s life, please visit our page at www.facebook.com/theboywhosmileswithhisheart.
— Kiowana, mother
Mother of two alpha daughters
Mother of one alpha puppy
Lover of words music and
Soul to Soul connections.
My son Martin has Moebius, athroygroposis and scoliosis, as well as other problems. He is now 30 and dad to Alfie, 8, and AJ, 7. He is on the autism spectrum, has 20% restriction on body movements and does not feel pain, so he needs to be checked over after a fall. He hates being labeled and said he was born this way, it is all he knows and like to get on with it. I have kept in touch with some of the members since Martin was around four years old and it has been great to watch them grow or hear their news. This has been much easier with the Internet.
— Pauline, mother
I am Nermine and my son David is now 6 years old (born on July 09,2009). He has a twin brother named Mark. David has Moebiuss syndrome . He has a fun spirit, he loves to laugh and make jokes. I taught him to have a happy heart (not the face) as the heart is the most important part to be happy, not how we draw the smile on our face. Thanks and appreciate your efforts.
— Nermine, mother
My son Quentin is 14. He was diagnosed with Moebius syndrome several hours after he was born. Since then he has had intensive intervention. Although he still has a few issues related to Moebius, he is pretty awesome. He’s incredibly intelligent, an A-B student, great big brother and son, and just an all around good person. The photo is his 8th grade graduation with his best bud and little brother Andersen. On to High School!!
— Jasmine, mother
Robyn is an elementary physical education teacher. She received the Harry L. Messick 2015 Community Service Award by the West Shore Foundation. Robyn’s interests are reading, bowling and traveling.