Climbing the Llullaillaco for Matilda

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It is difficult write about our daughter Matilda because my eyes become full with tears of joy. She really looks like an angel, with a beautiful smile. Her eyes tell you everything, and reach into the heart of every person that meets her.

We have always felt that the cure for Rett Syndrome and Matilda is there, around the corner, but we need to do our part to help bring the cure closer to a reality for all Rett families.

My Dad, Matilda`s grandfather, loves her. His personality is such that he could not understand that nothing could be done, so he decided to climb a very special mountain to raise awareness and funds for Rett Syndrome and the research. The mountain has special meaning. It is known as the “Children’s Mountain” because in the time of the Incas two children were sacrificed and mummified there. He wants to tell people about Rett Syndrome and about supporting the cause, and climbing this challenging mountain is a way for him to help.

Please support his climb and the research that can change Matilda’s life.


Spanish:


Es difícil escribir sobre nuestra hija Matilda porque mis ojos se llenan de lágrimas de alegría. Ella realmente se ve como un ángel, con una hermosa sonrisa. Sus ojos lo dicen todo y alcanzan el corazón de cada persona que la conoce. Siempre hemos sentido que la cura para el Síndrome de Rett y para Matilda está ahí, a la vuelta de la esquina, pero tenemos que hacer nuestra parte para ayudar a acercar la cura a la realidad de todas las familias de Rett. Mi papá, el abuelo de Matilda, la ama. Su personalidad es tal que no podía entender que no había nada por hacer, por lo que decidió escalar una montaña muy especial para crear conciencia y reuní fondos para el Síndrome de Rett y para la investigación. La montaña tiene un significado muy especial. Es conocida como la "Montaña de los Niños" porque en el tiempo de los Incas dos niños fueron sacrificados y momificados allí. Él quiere contarle a la gente sobre el síndrome de Rett y apoyar la causa, y escalando esta desafiante montaña es una forma de ayudar a su nieta.


What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (1)

  1. Astor Salvador 
    7 months ago
    $50

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