The Foundation for Nager and Miller Syndromes

The Foundation for Nager and Miller Syndromes Blog


Jun
29th
2015 FNMS Family Conference!

DeDe Van Quill

2015 FNMS Family Conference!

Many of the member families of The Foundation for Nager & Miller Syndromes will gather on June 25 of this year in New Orleans, Louisiana.  We hope to play host to a number of new member families this year in a city known world wide for good times!   

Added on 06/29/2010

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Making Connections by The Foundation for Nager and Miller Syndromes Blog


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posted by elena on 01.12.10 at 19:42

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Mi nombre es Elena Suàrez, vivo en Quito-Ecuador. Hace 19 años naciò mi primera y ùnica hija. Andrea naciò con el Sìndrome de Nager y una variaciòn del Sìndrome Threacher Collins. Han sido años muy difìciles, pero hoy luego de haberle practicado varias cirugìas de reconstrucciòn, ella està muy bien. Es una excelente estudiante y hoy ya está cursando el tercer semestre de la Universidad. He conocido de la existencia de esta fundaciòn y me interesa saber què tipo de ayuda puedo recibir.

posted by LOURDES on 05.11.10 at 17:42

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Mi nombre es Lourdes Castillo, Naci en Mexico pero tengo 22 anos viviendo en Estados Unidos, en Long Beach California.. Yo tengo una hija de 17 anos con el sindrome de Nager, y a diferencia de tu hija a la mia no ha habido ninguna operacion que le funcione, despues de 17 anos ella esta como al principio respira por traquea , come por sonda en el estomago y tiene cualquier cantidad de cicatrices por todo su cuerpo, en la fundacion he recibido mucho apoyo moral cuando hemos podido asistir a las conferencias, siempre es reconfortante ver que hay mas gente que esta viviendo situaciones similares a la tuya, que no estas solo en el mundo, y que estan tratando de encontrar respuestas a todas esas preguntas que estan en tu mente desde que te dieron el diagnostico de Nager sindrome. Tambien tienen libros y videos sobre los diferentes sindromes y si tienes alguna duda sobre aceptar alguna operacion o tratamiento medico para tu hija, siempre hay algun padre que te puede contar su propia experiencia al respecto. Me da mucho gusto saber que tu hija esta muy bien, que Dios te bendiga a ti y toda tu familia

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my nombre es maria gomez es la primera bez q entro a este web y me doy cuenta q no soy la unica con una hija con este sindrome my Princesa tiene 5 anos es my tesoro eya tiene neger , tiene traquea gtub ya le an echo barias sirujias pero todabia le faltan mas, es muy fuerte berla sufrir pero dios nos a dado fuersa para segi adelante y algundia berla bien q dios las bendiga atodas y nos siga ayudando
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