AGREE OR DISAGREE?

     I need some direction. After an email conversation with one of the mothers of a Moebius child I began to think about the present and the future. In the future I think we all hope that Moebius Syndrome will be cured and if it could be a retroactive fix, so much the better. But the clock ticks and life goes on. New members enter the Moebius world each day?.......week?.....month?, I don't even know the frequency.

     I find myself realizing that there is the future battle fought, for the most part, by medical research. Those with Moebius today are the willing guinea pigs and someday perhaps Moebius will be cured. Additionally, there is the battle that is fought here and now, in the present by everyone connected to Moebius Syndrome. This battle, the present battle, is what I believe needs to be chronicled for the new-comers and those that need extra support now and then. As it stands today, if you deal with Moebius, you deal with Moebius. It's a day to day, hour by hour battle. It isn't going away.

     How each of us copes with this situation, whether we are a person with Moebius, a family member or friend, is the present tense front line issue. These are the things I want to know. As time slips by for Sam, I want to make as few mistakes as possible. Her mother wants to know what to expect and how to cope with the present.

     This is why I ask for written feelings and experiences. I want some help and I think others want help and insight also.

     Hopefully, Moebius will be increasingly addressed by the medical community as time goes by. But the thing is,.....time is going by. I do not have the luxury of waiting until someone cures Moebius Syndrome. Sam can't be put on hold. She moves forward every day. We have to move with her.

     So, if you can write about your feelings and experiences,......please do. The effort will not be wasted.

Thank you,
TV