Countdown to Moebius Syndrome Awareness Day 2019
24 January is not only the birth date of Paul Jullius Mobius, but it also gives rise to the annual celebration of an Awareness Day for children / adults suffering from Moebius Syndrome. This was the day our lives were put on course -part of the same journey, with Paul Mobius as the Pilot, we the passengers.
The realization that word around Moebius Syndrome has spread brings a smile upon my face. Somewhat 16 years ago, and longer, this was a much feared disorder. The diagnoses were dreadful, parents were sent home without any hope, advice or information. Within the medical fraternity you were told to institutionalize the child – not to love him/her – don't get any hopes – it's only voluntary reflexes – he will be blind or will not even be able to be fed. He is not educable – he will be a complete vegetable. Who could survive against these odds?
What was left for parents to hold onto but Prayer, love and a Godly miracle! With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. In hindsight, any challenge or disability to me means loving that person unconditionally, so let us step up and spread the awareness. Our appeal is simple – in support of those living with Moebius Syndrome, wear purple on 24 January and share your knowledge about this disorder. Your contribution can make a difference. 24 January is now also a day of Celebration in the Life of those living with Moebius Syndrome. Thank you to all who have made this day possible and for giving our children a new meaning to life.
- Kay Von Willingh
When I was asked what MSAD means to me. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections. I think of my friend Tim Smith, who has been informing masses of people about Moebius Syndrome for years. MSAD 2011 meant (to me) that a common goal within the Moebius community had finally been met. It also means that we as a community have something that we can be proud of.... And I am just happy that my family and I can share in and be a part of something that is bigger than myself.
- Donnie Downs
What does Moebius Syndrome mean to me? It has meant, first of all, that life was a bit harder for me than others. It was and is harder for me than for others. It was and was harder for me to say certain words, to do certain things. When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either). At the same time, having Moebius Syndrome has allowed me to get to know some wonderful people, people whom I never would have known otherwise—of course I speak of the Moebius Community. And I think having to overcome the obstacles that I and all of us face, has made me tougher, a bit more resilient, than I would have been otherwise. I'd like to think all these things, added up, have made me a better person. All of us who have Moebius Syndrome are still human beings. We have our faults. But we understand diversity—we are an excellent example of diversity. We understand achieving despite obstacles, we understand climbing mountains, striving, trying. Having Moebius doesn't make life easier. But the entire Moebius community and what it achieves daily shows—life sure is worth living.
- Kevin Smant