For every purple “Smile With Your Heart” Jewelry Piece purchased, I donate $10
to the Moebius Syndrome Foundation
Our daughter Ivy was born on October 5 2014. She has a very rare condition called Moebius Syndrome. This condition is so rare, researchers estimate that only 2-20 per million people have Moebius Syndrome.
WHAT is Moebius Syndrome
There are many symptoms that affect someone with Moebius Syndrome and varied degrees of how each person is affected. The following (taken from www.moebiussyndrome.org) gives a general explanation of Moebius Syndrome:
“Moebius syndrome is a nonprogressive craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Individuals with Moebius syndrome cannot smile or frown, and do not have lateral eye movements. Many individuals with Moebius syndrome also have skeletal involvement with limb abnormalities or Poland syndrome. People with Moebius syndrome can have respiratory
problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, weak upper body strength and autism spectrum disorders.”
WHAT does the Moebius Syndrome Foundation do?
The Moebius Syndrome Foundation provides support for individuals and families affected by Moebius. They also promote awareness, host conferences, and advocate for scientific research to advance the diagnosis and treatment of Moebius Syndrome and associated conditions.
WHY Purple & WHAT does “Smile with your heart” Mean?
Purple is the official colour for Moebius Syndrome awareness. Because people with Moebius are unable to smile with their mouth/face, their smile comes straight from their heart.
MOEBIUS SYNDROME AWARENESS DAY is JANUARY 24. Wear your purple proud!