Moebius Syndrome Awareness Day Testimonials 1

Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day Testimonials: Moebius Syndrome Awareness Day (MSAD) is important to me for many reasons. The first, and foremost, reason is my beautiful little niece, Dakotah. She was born in October, 2008. Like many of the other families, we learned of a new syndrome that day that very few had ever heard of. I remember the call from my sister, Stacey, telling me Dakotah was born and that something was wrong. (Dakotah was fortunate enough to be born in a hospital with a doctor that was aware of Moebius Syndrome, so she was diagnosed within 24 hours) To better understand what Moebius Syndrome was, I searched the internet and found minimal information about it. Thankfully, I found the Many Faces of Moebius Syndrome and Moebius Syndrome Foundation websites. The websites have brought many families together through love, support and sharing of personal knowledge and experiences, however, with very little information available to families otherwise this day is important, and much needed, to give a voice to the syndrome and the families who live it each and every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding to those around them, and within the medical community as well.

– Andrea (Sweetwood Smith, Denver Colorado –

I was born in the Dark Ages ..1948.. with a disorder that I found out much later as an adult.. actually had a name …Moebius Syndrome. So the greater part of my life has been spent totally UN-WARE of what Moebius Syndrome means to anyone…especially to me! Then in 2010 with a great deal of support .. I was fortunate enough to attend my first Conference in Denver. I finally realized “my Moebius” is shared by many others AND I was no longer alone! Moebius Syndrome Awareness Day .. as every new day is for me now .. a chance to share more of myself and that “awareness” with others.

– Alice Goeldner, Nekoosa, Wisconsin –

To me Moebius Syndrome Awareness Day (MSAD) provides an opportunity for my friends and associates to have one of those AHA moments. You know the ‘aha’ feeling when your first science experiment works, when you first see a mother cat give birth to kittens, or when you get the first kiss by a member of the opposite sex not a relative (unless you’re from Arkansas I want others to begin their AHA moment with Awareness; understanding what Moebius Syndrome is all about; its different manifestations, and being aware that by and large most Moebius folks are normal in all other respects. Next I want them to move to Honesty – honestly recognizing the worth of each individual and honestly believing that, “Except by God’s Grace go I.”It’s only through awareness and an honest appraisal that others can then move on to full Acceptance of those of us with Moebius Syndrome. I pray as we approach MSAD 2012, we’ll all strive to bring one of those AHA moments to those we know and/or influence. God bless!

– David Moffitt, Forth Worth, Texas –

The media have made a number of illnesses well known to the
public such as cancer, mental health illnesses like Bipolar Disorder and
Schizophrenia and that is just to name a few. Though in most cases
Moebius Syndrome isn’t life threatening it is still a syndrome that
affects people all around the world emotionally and physically.

Every day people usually have no clue what Moebius Syndrome
is, so sufferers with severe facial paralysis sometimes will get looked
at strangely while innocently walking down the street, going about their
day. Often teenagers in high school will get bullied because having
Moebius Syndrome makes them look different from others. This can have a
serious affect on people, making them feel even more anxious about their
appearance. It is hard enough having to wake up everyday knowing there
is no cure to this syndrome; they don’t need someone constantly
reminding them of that.

Sometimes moments of sadness just hit people when they
remember they will never be able to smile, they will never be able to
show facial expressions such as happiness or sadness. It is hard when
others don’t understand the syndrome; they might assume a sufferer is
moody or unfriendly by the appearance of their face when this is not the
case. Most of the time it is really hard to let people in because it
can be awkward breaking the ice, not knowing quite how to explain
yourself to other people so that they can get a better understanding of
the syndrome. And when you do explain yourself to someone you have to
explain yourself to someone else and this can be tiring.

Having a Moebius Syndrome Awareness day will benefit the public so much, its not a common syndrome so putting it out there to the world will just make people with the syndromes life a little easier. That way the world is educated and familiar with it and hopefully they will be able to recognize someone with Moebius Syndrome. Hopefully they will be able to realize that people with Moebius Syndrome and perfectly intelligent and intellectual, and that they lead normal lives. This will also benefit Doctors who will be able to diagnose new born babies and infants quicker.

Having an awareness day will also be great for people with the syndrome who are unaware that there is a Moebius Syndrome website and group on Facebook that they can go to if they need some support. This can be a very positive experience as they can interact and meet up with others with the syndrome; this can help people feel less isolated. Finally the more people that know about the syndrome the better it will be to find what causes Moebius Syndrome as this has been yet to be discovered.

– Loriana Sofia Firth, Enfield, Enfield, United Kingdom –

I was surprised by how much Jasper got out of MSAD. As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally. The pride in his face from being the Moebius Syndrome Holiday hero for MSAD was incredible- it dawned on me then that MSAD was important for him because it gave him the opportunity to celebrate who he is BECAUSE of meobius syndrome not despite it. I have always tried to ensure that Jasper never feels as though he is deficient or that he needs ‘fixing’, MSAD helped to consolidate this.

– Lauren Broadhurst, Australia –

A few months ago I was watching an old episode of ER where a young boy with Down Syndrome is brought into the emergency room. Immediately the TV doctor makes a decision on how his patient should be treated after considering a few risk factors involved in having Down Syndrome. This is exactly why I think there should be a Moebius Syndrome Awareness day. It’s mostly likely that if the situation were real the doctor wouldn’t even know what Moebius Syndrome is, never mind knowing how to treat someone with it. I believe not only could a Moebius Syndrome Awareness Day teach doctors how to treat those with Moebius medically, it would teach others how to treat those affected by Moebius socially as well.

– Gavin Fouche / Cape Town, South Africa –

The 1st Annual Moebius Syndrome Awareness Day was an invaluable day for our family. When our son was diagnosed, only our neurologist had heard of Moebius Syndrome. I believe that with the HUGE effort of the entire Moebius Syndrome community, MSAD allowed us to educate countless people across the world, including our family and friends that were unaware of exactly what Zayden’s diagnosis meant. The outpouring of coverage from news outlets and the support from complete strangers was overwhelming and made me proud to be a part of such a monumental day. Our family is looking forward to helping to MSAD an even bigger success this year.

– Jen Wise, Treverton, Pa –

Moebius Syndrome Awareness Day can best be described as a huge gift to those who have longed for more information and respect. Parents, relatives, friends and fellow Moebians made MSAD 2011 a huge success through their hard work and creativity. Their efforts piqued public interest, including the media. It doesn’t have to stop there. Let’s make January 24, 2012 known throughout the world so parents and health care providers can make informed decisions when a diagnosis of Moebius Syndrome is made.

– Holly Williams, Princeton, Kentucky –

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

Moebius Syndrome Awareness Day