yosemoebius.es
Soy Moebius - yo sé moebius
http://www.yosemoebius.es/soy_moebius.html
Yo sé Moebius y tú? Permítanme que me presente. Mi nombre es Rafa. Nací el seis de marzo de 2009 en San Javier, Murcia. Tengo Síndrome de Moebius. Este síndrome me hace ser diferente porque me impide poder sonreír, hacer muecas,. Pero no me incapacita para estar contento, enfadado, llorar o sorprenderme. Si aprendes a mirarme, conocerás mi estado de ánimo. En muchas ocasiones el Síndrome de Moebius está acompañado de otras patologías. En mi caso nací con pies zambos, retrognatia y con lo que. Y unos padr...
cleftline.org
Links L-P – Cleft Palate Foundation
http://www.cleftline.org/links/links-l-p
Parents & Individuals. Find Local Cleft/Craniofacial Specialists. Booklets & Factsheets. Grants & Awards. Tips for Hospital Nurseries. Support Organization Links Focusing on Cleft Lip, Cleft Palate, and Other Craniofacial Conditions:. Many Faces of Moebius Syndrome. Support group dedicated to creating a better tomorrow for ourselves and our children through education and public awareness . Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: Blenderized Diets - Real food for real people
http://moebiussyndromemom.blogspot.com/p/blenderized-diets-real-food-for-real.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Blenderized Diets - Real food for real people. Blended Food Resource Group - http:/ www.foodfortubies.com/. Facebook page for above group - https:/ www.facebook.com/foodfortubies. Blenderized Diet group on Yahoo Groups. Homemade Blenderized Diet Handbook - not all that helpful. Http:/ youstartwithatube.blogspot.com. Our basic recipe for 5-6 feedings worth:. We are re...
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: An update, finally!
http://moebiussyndromemom.blogspot.com/2013/02/an-update-finally.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Friday, February 22, 2013. An update, finally! So I haven't posted a real update on Luke and our family in quite a while. So here it goes. Plus he has been really working, I mean like 20 minutes at a time, at standing up by himself. He is doing a pretty good job working at it too. We are pretty excited about this, obviously. One day post surgery #2:. And then she got...
moebiussyndrome.co.za
The Fresh # PROJECT | 24 Jan 2014
http://moebiussyndrome.co.za/node/52
Moebius Syndrome Awareness Day. Moebius syndrome is a rare neurological condition resulting in facial paralysis that may include respiratory, eye, limb, speech, hearing and other disorders. The Fresh # PROJECT. The Moebius Syndrome Foundation Africa, The Moebius Research Trust. And The Many Faces of Moebius Syndrome. The Many Faces of Moebius Syndrome, have teamed up with Fresh Printz Industries to launch a new line of Moebius Syndrome Awareness Shirts. The Fresh # PROJECT. Find us on :. I'm giving you t...
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: May 2015
http://moebiussyndromemom.blogspot.com/2015_05_01_archive.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Monday, May 11, 2015. Trilogy 100 vs. LTV 1150. Luke got a new vent last week, finally! We are very excited about it and think it is great. So far Luke is doing very well on the new vent. You may be asking, "Why would you want a new vent? What are the benefits? Please feel free to ask questions and share your Trilogy and LTV stories in the comments below!
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: November 2012
http://moebiussyndromemom.blogspot.com/2012_11_01_archive.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Wednesday, November 28, 2012. Luke is doing awesome! So I never seem to find the time to sit down and write but here it goes. Luke is doing awesome! He is doing new things and other things better every day. What has he been doing? He stood up by himself this week! He is using more words with his speaking program on his iPad. He is walking better in his walker. We are...
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: January 2013
http://moebiussyndromemom.blogspot.com/2013_01_01_archive.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Saturday, January 26, 2013. So all the overwhelming things caught up to me today. And what was the thing that made it all come crashing down in my mind? At first I only got some of it. There is an explanation for each of her items down lower. But the main point is, FORWARD! Thursday, January 24, 2013. Moebius Syndrome Awareness Day 2013. Today is Moebius Syndrome Awa...
moebiussyndromemom.blogspot.com
Moebius Syndrome and Our Family: We have a kindergartener!
http://moebiussyndromemom.blogspot.com/2014/10/we-have-kindergartener.html
Moebius Syndrome and Our Family. Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine. Tuesday, October 7, 2014. We have a kindergartener! The leaves are beautiful reds mainly with oranges, yellows, and maroons mixed in. It is relaxing and calming to look out on the beautiful fall trees. Fall is my favorite time of the year and I am enjoying it. Up until about a week ago it was beautiful outside so we got to enjoy quite a bit of it. Smart Apps For Kids.
yosemoebius.es
24 de Enero: Día del Síndrome de Moebius - yo sé moebius
http://www.yosemoebius.es/4.html
Yo sé Moebius y tú? 24 de Enero Día del Síndrome de Moebius. January 24th Moebius Syndrome Awareness Day. El 24 de enero se celebra el Día Internacional de Síndrome de Moebius. Queremos sensibilizar a la sociedad sobre las necesidades de los afectados y exigir un mayor estudio y conocimiento de este síndrome, ya que incluso la mayoría de los profesionales que se dedican a la medicina lo desconocen. Queremos que el Día Internacional de Síndrome de Moebius tenga reconocimiento oficial. Únete a la causa.
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