Síndrome de Noonan,No lo elegimos apareció en nuestras vidas hace 15 años

By Marga, Noonan syndrome, Spain, November 22, 2017

Una Mirada de Esperenza

Somos una familia como cualquier de vosotras,hace 15 años nacio Miguel y con el vino el Síndrome de Noonan,con el cual estamos luchando todos,y digo todos porque Miguel es el afectado pero todos los que estamos a su alrededor somos su escudo.

Miguel tiene síndrome de Noonan y no lo eligió él......nació con ello,una enfermedad genética que le afecta a muchas partes y sistema de su cuerpo teniendo problemas de Corazón,Visuales,de Crecimiento,Renales,Articulares etc, que le ocasionan múltiples ingresos y visitas a Hospitales,un ejemplo de valentía por tener que afrontar tanto sufrimiento desde que nacio,aunque su mirada de Esperanza no la pierde.

 

We are just like any other family. 15 years ago Miguel was born and with that came Noonan syndrome, a rare disease against which we are all battling. I say ‘all’ because although Miguel is the only one with Noonan syndrome we all stand with him to act as his shield against this rare disease.

Miguel has Noonan syndrome but he did not choose it… he was born with it. Noonan syndrome is a genetic disease that affects many of his body systems causing problems with his heart, eyesight, growth, kidneys, joints etc. and this has caused many admissions and visits to hospitals which are evidence of his great courage. This courage has enabled him to stand up to the challenges he has faced from birth, and above all to never lose his look of hope.

 

Find others with Noonan syndrome on RareConnect, the online platform for people affected by rare disease

 

 

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