Moebius Syndrome: What are we thankfull 4?
In November of 2019 we held a contest asking people what they were thankful for because of Moebius Syndrome. We got a lot of great answers.
Moebius Syndrome Answers
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"I am thankful for Moebius because I have been able to meet so many amazing people, groups, organizations and many many more friends. I would not have met all of these wonderful people without knowing moebius."
" I am thankful for Many Faces of Moebius and all the help and awareness they bring to Moebius! I am super thankful for our Moebius Moms Group! Savannah would not be where she is today without them❤️"
"I am thankful for Moebius Syndrome because God has used it to change my heart. When God gave us Kash I never expected his Moebius to change me for the better! I love my Kashman! 💜"
"I am thankful beyond measure that my granddaughter Marley Ellen Brown who so very sadly became our angel three and a half years ago was my daughter JaclynBrown's precious daughter. Marley had Mobius yndrome and Jaclyn is her voice we have had fundraisers and all goes to the Sick KIDS HOSPITAL we miss your sweet spirit Marley Brown never to be forgotten love always Grandma Rogers i would lovebto win to give to my daughter still grieving Marley touched so many in her short purpose on earth she was 2 years old when she left us to be with Jesus ! God bless you for reaching out to us!"
"I am thankful for my two nephews made special by God with Moebius Syndrome. So many blessings, so many lessons- like perseverance every day in small areas of therapy brings amazing results."
"I am thankful that when I was born you didnt give me away, instead you accepted and embraced me. I am thankful even though you were afraid of what was in store for me, you were by my side. Would I even be able to walk, talk eat or return your love and devotion? I am thankful you made every effort to seek medical treatment which was sometimes more painful for you than for me. I am thankful for you wanting to shield me from being hurt, but loving the hurt away when you couldn't! I am thankful that Moebius Syndrome has given US an incredible bond of strength, love and incredible resilience to face this world! I am thankful for my Mom sharing Moebius Syndrome with me! Miss her! 💜"
" I am thankful for my sweet girl. She brings joy to our lives, she also makes us realize that our problems and worries are trivial in comparison to her, she never complains, she never feels sorry for herself, she just marches on with sheer determination. I am grateful for the our Moebius family. I am certainly grateful to my little sister Andrea Sweetwood-Smith who gives so much of herself and her time to support our Moebuis family, she gives selflessly and with love, she is the best!!!!! Xoxox"
"I am thankful for Moebius Syndrome for many reasons GOD picks his special ones to show others it’s okay to be different I for one didn’t choose the smile surgery because I am very happy the way GOD chose to make me! I feel as if I taught my family friends ex... it’s okay to be different everyone’s not the same I smile with my ❤️ and that’s the way GOD made me I didn’t even know I was different my family and friends ex... treated me wonderful growing up and I thank GOD every day even though I had good days and bad days there’s always someone worse off then me. GOD picked the perfect mother for me that has been there no matter what I am 42 now and I am very happy to tell or teach anyone that ask me or wants to learn about my Syndrome it’s not easy but it’s what you make it!❤️ # Moebius Strong!"
"I'm thankful for having Moebius Syndrome because I have a unique perspective on life. I am able to have insight on life for what it is and be grateful for every second of it. As a teen I really, really hated having Moebius and did not plan on seeing 20 years old. I am almost 30 now and I could not be more happier to be alive. I'm married to such a great man and my best friend that I probably would take for granted had I not been born with Moebius. I am thankful to be alive!!!"
"I am thankful for my brother John. He became an angel 22 years ago. He taught me how to live despite having difficulties in life. And because of him I was lead to these amazing families."
"My beautiful great granddaughter has Moebius. We had never heard of it. Thankful that awareness is being made about it. My great granddaughter also has no left hand. She is amazing and does not give up trying things. She smiles with her heart. A special little girl."
"I am thankful for being chosen to be Annie's mum. Annie was born with moebius syndrome and has taught me that being unique and different is the best thing a person could be. I'm also thankful for becoming a mum and realising how much my own mum is my best friend and best supporter. Without her we would both be lost 💜"
"I am forever thankful for Moebius Syndrome because we were given Wesley, who unknowingly has changed our lives. It has taught me to look beyond peoples differences and it has also taught me to be more sensitive to people's emotions and feelings. 💜💜"
"I am thankful for Jeremiah and Moebius Syndrome because they have taught me to look deep into someone's heart. Jeremiah has taught me so much about love, kindness, resilience, and determination. I have become a better person because of Moebius Syndrome."
"I am thankful for my little Granddaughter Annie, I thought I had tolerance, acceptance etc I did but I know now it was on a superficial level. This Child has changed my world profoundly, she has brought so much with her. I am left with a wonder , a wonder about life and humanity I never considered before. Humans are truly amazing as is creation. She has in fact filled my heart to bursting with love and admiration. She has also introduced me to a world full of very special people, funny, kind, generous, caring people with a shared purpose. My heart flips when I think of Annie."
"I am thankful because we, (my husband and I) have known and loved Tim Smith forever! We are overwhelmed, thankful, and proud of the time and attention and unity that he brought to this condition. Everyone should know that they are special and thankfully this platform allows that to occur."
"I am incredibly thankful for my girl. I have learned more about strength, resilience, independence and determination in this past two years. I am grateful for Moebius syndrome because we have learned to truly live in the moment and to celebrate the small achievements as much as the big milestones. We celebrate the beauty in being unique. She is our little unicorn and we love her dearly. We are so proud of her 💜"
"I'm thankful for GOD for giving me very loving family that loves me so much even if i was born with mobebius syndrome,im alive because of GOD and that i can make so many friends, that they love me for who iam and not how i look because im special,im very smart but nothing can stop for what i can do, God helped me to be strong."
"This is a good question. I hope what I have to say comes across the right way. I think, for me, having Moebius syndrome allows me not to be judgemental. People may look different, sound different, have different views/beliefs etc BUT we are all people/human beings. No one is better than someone. We live in a very diverse world. Acceptance is powerful."
"I'm a really good judge of character. People tend to talk around me or just ignore me altogether so I learned to sit and watch people."
I am grateful for my son, tho he has now been re-diagnosed, i met many lovely people through the years, watched them grow and had families of their own, families supporting families, 30 plus years wow. The community just grows and my son taught me patience, diversity, confidence, and much more. He has shaped me to the person i am today x
I am grateful to have found a community who understands and supports me!
"I am thankful for what having a daughter with Moebius has taught me. Ailee he endured so much and since her birth continues to show us her willingness to fight. Her birth was extremely hard on my husband and I in a new marriage (barely seeing each other and traveling back and forth, being away from our other children) but today our relationship is stronger because of it and Ailee continues to amaze us with her abilities. As a couple and a family of 7, we are strong...Ailee is our glue 💜"
"I am thankful for my daughter Leanna Rutter bc her Moebius showed me how good God is. I don't think I ever prayed so hard in my life! She has shown us all hope & beauty and so glad she is mine."
"I am thankful that my daughter, Abigail, when asked what she likes best about herself, she immediately answers ‘that I have Moebius Syndrome’. She believes she is a child of God who makes no mistakes. She turns 8 soon 💜"
"Uhmm i dont know if there's anything much positive about being moebius but i guess it has allowed me to spread new knowledge to the medical community that were not really aware of its presence in our society. It also allowed me to educate college students including my friends about moebius syndrome to a point that they are able to explain to others what moebius is and that it doesnt affect your intellect and your social life.. Well it is manageable.. Also i have an opportunity to know more people like me, confident and happy people who have the same condition who continuously inspire me. So yeah that's what i think makes me glad to be moebius."
"I am thankful for Moebius Syndrome because of my daughter Ava! It’s show us how strong we are and how wonderful our support system is. 💜💜💜"
"Honestly this is a very tough question to answer. When I first read it I could not think of one think I was "thankful" for for living 59 years with this syndrome. Being judged and bullied was never fun. So it taught me to be strong and not to judge so easily. There was no option when I was young. But I am so blessed that people who know me love me. They say I smile all the time. I have to prove myself a little harder than "normal" looking people but once that is done I can do anything including now being in Network Markwting aka Direct Sales and having a team! Me! Someone who doesn't look like the girl next store but has the biggest heart and a very old soul. I guess what I am mostly thankful for for having Moebius Syndrome is the people and parents of children that I have met telling them there is hope. There is nothing wrong with my brain. (Well debatable) Its the people i have met on Social media. Scott Silvey and his beautiful wife Shannon Lemanski Silvey. The first parents of a child with Moebius I got to know. Its people like Leslie Diane Dhaseleer and her handsome husband Alan. Leslie was the very first person I ever met that looked like me. And its people like Stacey Sweetwood-Mitchell who I cannot wait to meet her in just a week or two? And its people like Tim Smith who was a founding member of this page because of him I don't feel so secluded anymore. So while the question still to me is strange. I am grateful for the friendships I have made along the way. Oh yes! And that includes Mr. Coffee himself Will Harrison."
"Because of Moebius Syndrome I am thankful to be raising children who see others uniqueness and love it."
" I am thankful for my son, Jason, who came into my life 41 yrs ago. That day and weeks following were very scary as we waited for many doctors/ specialists to determine that Jason was born with Moebius Syndrome. It was more difficult to get answers then, let alone find doctors that had even heard of Moebius Syndrome. I wished I knew then what a Blessing having Jason would be in my life❤. Love you, Jason Gage."
"I am thankful for both of my parents Eva Gutierrez and Larry Gutierrez. They never let doctors define my ability and let me define what I could do and who I was. They have always let me be and always have my back. My mother passed away but she shaped me into the confident advocate that I am. Moebius opened up a community to me not just of people with Moebius but the disability community as a whole. Moebius and my parents have shaped me and created a person who is always to see what's on the inside."
"I am thankful for being surrounded by family that loves and accepts me for who I am. There are days where I hate my moebius and days that i wish I was born "regular" but i know that having moebius has helped me be sensitive to others in all different situations. I am also thankful for this community that i only recently discovered 💜💜💜"
"I have been in deep thought about what I’m grateful for. I’m so grateful that my parents took action after my birth & couldn’t suck, they immediately took me to the children’s hospital in San Diego. At the time, my mom & dad were concerned what was wrong with me. There was a visiting doctor from New York that examined me & knew right off the bat what was wrong: I was born of having Moebius Syndrome. Back then it was extremely rare, he (the visiting doctor from New York) immediately put me in a feeding tube & taught my parents how to use the machine. I was on it until my 1st birthday, after that was able to eat normal food. I’m so grateful to be here today if it wasn’t for my parents & doctors actions. I have written a memoir about it & all the struggles I have had living with Moebius Syndrome. I still have struggled with it & I’m 49 years old now. With my memoir (whenever it’ll be edited & hopefully published), I want to help others who are born of Moebius Syndrome or have it to be inspired by my story. I thank God everyday for being here. My parents have passed on. (I have been trying since dad’s passing in 2016), to find the doctor that 1st diagnosed me after my birth, but it’s impossible. Not even sure if he’s alive. Thank you for having this Facebook page. I have met people like myself with Moebius Syndrome. God bless you all & happy Thanksgiving too."
"I am thankful for my grandson Kevin. He was born with Moebius syndrome in 2006. He has made me realize what is most important in life. All of the little things we worry about every day seem so unimportant when you are watching someone fight for their life everyday. I have met so many wonderful caring people through this journey. I have watched our daughter, and son-in-law go through hell and back. I could not be prouder of them. They make it look easy but I assure you it’s not. Kevin has the best life possible because of them. Our life was forever changed when Kevin was born. We have made wonderful life long friends we would of never known if it wasn’t for Moebius."
"I am thankful for my cousin Kevin. He has taught me how to love and enjoy every moment. He has changed my life for the better in more ways than I can ever explain."