Cómo agradecerle a Mari-Fer?

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A Mari Fer le encanta hacer travesuras con sus hermanos mayores, bailar y dejarse cargar por su hermana Ximena y simular batallas de Star Wars con su hermano Pablo la hacen muy feliz. La equinoterapia la relaja mucho y meterse a una alberca la pone muy contenta, le fascina conocer otros niños, adora que le lean un cuento, su caricatura favorita es “Masha y el Oso” porque la hace reír mucho, sin importar haber visto cientos de veces el mismo capítulo.

Después de casi dos años de visitar a varios especialistas, el 17 de agosto del 2018 nos confirmaron que tiene Síndrome de Rett; esta noticia nos ha llevado ha tener esperanzas, desesperanzas, alegrías, tristezas, altibajos, pero hemos retomado sobre todo el aprendizaje, ya que a través de los ojos de Mari Fer podemos ver lo que realmente es importante en esta vida.

Los mejores regalos han sido sus abrazos y sonrisas, esos logros que para el mundo son pequeños para nosotros son inmensos, pues sabemos del esfuerzo que representan, como cuando después de casi 3 años dio sus primeros pasos contra todo pronóstico. Mari Fer nos ha enseñado a escucharla aún sin palabras, a  poder comunicarnos con ella.

¿Cómo poderle agradecer a Mari Fer todo esto?

Con mucho amor y paciencia para que tenga la mejor calidad de vida posible, y apoyando para poder encontrar una cura, con la que ella y todas las princesas con Síndrome de Rett puedan expresarnos sus pensamientos, y sentimientos. Espero un día poder corresponderle a Mari Fer.

A nombre de Mari Fer y todas las princesas Rett, les agradecemos con el alma su comprensión , inclusión y amor por ellas, aquí puedes donar desde 1 dólar para que algún día esta fundación encuentre la cura y regresen las palabras a nuestras niñas.

English

Mari-Fer loves making pranks with her older brothers, dancing and being carried by her older sister and simulating star war battles with her brother. Equine therapy relaxes her a lot, and getting into a pool makes her very happy and full of Energy. She loves to meet other children, she likes when you read a story. Her favorite cartoon is "Masha and the Bear" which makes her laugh a lot, no matter if it is the same chapter she has seen hundreds of times.

After almost two years of coming and going with different specialists, on August 17, 2018, we confirmed Rett Syndrome. During this time, we have had ups and downs, hopes, despair, joys, sorrows, but above all we have had a great learning. Thanks to Mari-Fer we can see through her eyes what is really important in this life. We have received the best gifts, through her smiles and hugs, in her great achievements even though they may be small for the world, like when after 3 years she took her first steps against all odds. Mari-Fer has taught me to listen, to be able to communicate without words with her.

How can I thank Mari-Fer for all this?

Well, I really do not know, the only thing that occurs to me, besides helping her to have the best possible quality of life, is to be able to support the research in order to find a cure, so that Mari-Fer and all the Rett girls with their own words can teach the world what is important in life...I hope one day to be able to communicate with Mari-Fer.

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 research to a cure 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.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

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