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OUR GROUP WAS FOUNDED IN THE FALL OF 1996. OUR FAMILY HAD JUST RETURNED FROM
OUR FIRST MOEBIUS SYNDROME CONFERENCE. OUR DAUGHTER LILY WAS ONLY 22 MONTHS
OLD. WE HAD THE OPPORTUNITY TO ATTEND A PANEL DISCUSSION WHICH WAS MADE UP OF
ADULTS WITH MOEBIUS. WE LEARNED A VERY IMPORTANT LESSON DURING THAT PANEL
DISCUSSION. WE LEARNED HOW EMOTIONALLY DIFFICULT IT WAS TO GROW UP WITH A
VERY RARE DISORDER. WE HEARD STORIES OF THE PAIN AND DEPRESSION MANY OF THESE
PEOPLE STRUGGLED WITH, EVEN AT VERY YOUNG AGES. THEY ARTICULATED THE PAIN
THEY FELT GROWING UP, FEELING VERY ALONE, VERY ISOLATED. FEELING THAT THEY
WERE THE ONLY PERSON ALIVE THAT LIVED THEIR LIFE. A LIFE WITHOUT A SMILE, WITHOUT
THE ABILITY TO EXPRESS THEMSELVES, WITH A MASK TO THEIR FEELINGS. THEY SPOKE OF
THE EMOTIONAL ABUSE THEY SUFFERED AT THE HANDS OF OTHER CHILDREN, BECAUSE
THEY WERE DIFFERENT. MANY OF THESE PEOPLE HAD NEVER SPOKE TO ANYONE ELSE WITH
MOEBIUS SYNDROME.

WE CAME HOME FEELING EMPOWERED WITH THAT INFORMATION. WE KNEW THERE WERE
MANY THINGS IN OUR DAUGHTERS LIFE WE COULD NOT CHANGE. BUT THIS WAS ONE AREA
WE COULD. WE COULD MAKE SURE THAT SHE GREW UP KNOWING OTHERS LIKE HERSELF.
OTHERS WHO SPEND EVERYDAY LIVING WITH MANY OF THE SAME CHALLENGES SHE LIVES
WITH.

OUR GROUP MEETS ANNUALLY. EACH TIME WE MEET WE LEARN MUCH ABOUT EACH OTHER.
WHAT WE LEARN FROM EACH OTHER, WE CANNOT LEARN FROM ANYONE ELSE. WE ARE
EACH OTHERS BEST SOURCE OF INFORMATION REGARDING MEDICAL CARE, TREATMENTS
AND SIMPLY WHAT TO EXPECT. WE ARE ALSO OUR BEST RESOURCE OF INFORMATION
REGARDING RESOURCES USEFUL TO EACH OTHER AND OUR CHILDREN.

THE FOCUS OF OUR GROUP IS TO GIVE EACH OTHER EMOTIONAL SUPPORT. IT IS VERY
COMFORTING AND REWARDING TO SPEND TIME WITH OTHERS WHO SHARE MANY OF THE
SAME EXPERIENCES WE DO.