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Darío le planta cara a la parálisis cerebral

23 noviembre 2011 - 23:40 - Autor:

 

Darío

Darío

El infierno empezó a los cinco meses. Hasta ese momento, Darío era como todos los bebés; pero a los cinco meses todo cambió.

Primero fue la vista, no la fijaba; luego uno de los brazos no terminaba de moverse como debía; y luego otros detalles. Del oftalmólogo al neurólogo. Y en la primera visita a este último, Jorge y su mujer ya anticiparon el diagnóstico: parálisis cerebral.

Lo defino como un cambio de guión. De repente tienes un guión, no porque lo hayas experimentado, pero lo has visto alrededor, y te esperas lo que se espera siempre. De repente, te quitan lo que estaba previsto, ya nada tiene el orden que debería, muchas de las cosas ya no se va a producir previsiblemente nunca, como que empiece a caminar. Automáticamente pasas a vivir otra experiencia, otro escenario. Se dice fácil, pero es muy difícil de tragar.

Comenzaba una nueva vida y Jorge, como otros padres, como José Luis Martínez, como Jose Carnero, ha encontrado en la escritura y en internet un aliado, un compañero de viaje, una cámara de resonancia para sus pensamientos, para sus inquietudes, para sus aprendizajes.

Jorge y Darío

Jorge y Darío

Jorge acaba de lanzar Plántale Cara, un portal que quiere ser un referente para todos aquellos que se enfrentan vírgenes a la parálisis, una primera toma de contacto con la discapacidad. Una toma de contacto desde la objetividad y la información de servicio.

Pero Jorge tampoco olvida su historia personal con Darío, su experiencia, consciente de que muchos padres acudirán a ella para reconfortarse. Jorge encabeza la página “Nuestra experiencia”, con un agradecimiento “Gracias Darío por ayudarnos a interpretar la vida de otra manera”.

Es inevitable trazar similitudes y diferencias con las historias de Uno entre cien mil y de El blog de Anna. De hecho, Jorge Martín y Jose Carnero son íntimos amigos, y Jorge ha sido un modelo para Jose. Encontrar “iguales” con los que compartir siempre es una buena terapia.

En general, no buscas un modelo específico de alguien que haya tenido un niño con parálisis, sino que buscas cualquier modelo de experiencia humana dura y trágica que es superada con gallardía y te sirve cualquiera. Esta es una de las múltiples contrariedades que puede vivir el ser humano. Al final, tienes una contrariedad muy grande, muchos seres humanos, desafortunadamente, tienen muchas contrariedades todos los días de todo tipo.

En cualquier caso, las trayectorias de Jose-Uno entre cien mil y Jorge-Plántale cara se separan.

Hay una variable que es el horizonte que hace que las cosas se puedan planear de una forma diferente. Lo nuestro es crónico, para toda la vida, lo de Guzmán se va a solucionar, esperemos que en un año como mucho. En nuestro caso, cada paso van surgiendo nuevas putaditas.

Esas putaditas son crisis epilépticas, una malformación en la cadera… Me admira y me inspira que Jorge no tenga ningún inconveniente en reconocer lo realmente jodido que es tener un hijo con parálisis cerebral.

Nadie está preparado para esto, para este cambio de guión. Estoy seguro de que, entre comillas, no lo voy a superar nunca. Mi sensación es que te meten un zarpazo en el alma y que el felino no se va, se queda quieto, te dice, bueno, no te voy a hacer más daño, pero está ahí, y cuando pasa algo nuevo pues te hundes. He pasado ratos muy malos, he pasado por la peor etapa de toda mi vida, de eso no tengo ninguna duda.

Se nota que Jorge ha pasado horas, muchas, miles de horas meditando sobre el proceso vital que están recorriendo con Darío. Por eso es tan valioso su testimonio, porque también pone sobre la mesa sus frustraciones, sin abandonar el optimismo, pero sin caer en la autocomplacencia.

Tienes un niño que no camina, con el que tienes que cargar, con un horizonte muy chungo y simultáneamente tienes un niño en casa que no para de sonreír, que te da amor como yo no lo he vivido con nadie, absolutamente incondicional, es una máquina de devolverlo amplificado, un amplificador de emociones. Y esto también es una experiencia única.

Estamos aprendiendo a entender la parte tan única y tan especial que tiene esto.

En la parte puramente formal, los proyectos de los padres coraje 2.0 también tienen divergencias. Mientras que Uno entre cien mil y el Blog de Anna adoptaron el blog como formato, Plántale cara se plantea, en primera instancia, como una especie de Wikipedia de la parálisis cerebral.

Hay mucha información, a muchos niveles, pero pensamos que la información está muy dispersa. A nosotros nos costó mucho tiempo hacernos una fotografía más o menos exacta de todo lo que implica el día a día con Darío. Qué iba a suponer en términos de desplazamientos, de ayudas, de médicos, de hospitalización, de centros de discapacidad, los neurólogos….

En apenas unos meses, semanas, el retorno que Jorge está recibiendo ante el lanzamiento de Plántale cara es brutal. De hecho, afirma que, por momentos, parece que está gestionando un voluntariado, pero ¡¡bendito voluntariado!! diseñadores que ofrecen sus ilustraciones, informáticos que se ponen a su disposición para crear una tienda on line de segundamano…

Para Jorge la ayuda que está recibiendo es vital, ya que Plántale cara tiene que convivir con su trabajo como investigador de mercados, con sus clases como profesor y, por supuesto, con su dedicación familiar.

Entre los proyectos de futuro de Plántale cara está crear un modelo de comunidad on line de los afectados. En ello está ya trabajando otro amigo y colaborador del Jorge, Miguel del Fresno. Y también está la parte reivindicativa o “reivindicactiva”, como la ha bautizado Jorge, que quiere acabar de una vez por todas con incivismos como que las plazas de discapacitados siempre estén ocupadas por no discapacitados.

Darío, con su madre, Carmen

Darío, con su madre, Carmen

¿Futuro personal y familiar?

El único éxito de nuestras vidas es tener normalidad. Ese ha sido nuestro gran esfuerzo y nuestra paliza gorda ha sido no dejar de salir con nuestros amigos, no dejar de salir al campo y echar a Darío a la mochila, en vez de quedarme en casa, que hubiera sido más cómodo.

¿Y el de Darío?

Si cometes el error de plantearte metas… Darío tiene que llegar aquí, Darío tiene que llegar allá… Lo primero que tiene que ser es feliz. Nuestro único objetivo es que sea feliz.

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Mucha fuerza y ánimo. Os comprendo muy bien aunque no esté en la misma situación exactamente. “El felino” se queda para siempre pero es lo que hay y sólo tenemos esta vida para hacerlo lo mejor posible.
Un abrazo grande!

Recomiendo encarecidamente la página web: http://www.plantalecara.com/
no sólo para temas de parálisis cerebral, ya que es un compendio enormemente útil de información y otros. Por ejemplo, a través de esta página, he podido acceder a otro sitio para comprar on line una camilla de masajes a un precio espectacular. Sobre Darío, soy su tío, qué voy a decir: Es un regalo de Dios.

¡¡Ánimo, chicos!! Nosotros seguiremos estando ahí, con vosotros y, sobretodo, con nuestros Darío.

Desde Altea nuestro más incondicional apoyo. Sed fuertes para esta dura lucha, Darío se merece todo el ésfuerzo del mundo.Él y todos los afectados por estas “putaditas” como muy bien dices, Jorge.
Besos para los tres.

Estiimados Jorge y Carmen;
Me emocione mucho viendo la sonrisa de Dario, irradia mucha felicidad
dentro de todo su ser.
Les contare en pocas palabras quien soy para que sigan adelante con todos sus proyectos. Estudie en el colegio, la universidad y mas bien hace poco me case, vivo totalmente independiente con mi esposo y mis tres perros y por ultimo todo esto con paralisis cerebral de nacimiento.
Les deseo con mucho amor, ADELANTE,

Mercedes

Realmente es increíble el coraje de muchos padres a la hora de enfrentarse con todo lo relacionado con sus hijos, lo sé por experiencia.
Soy madre de un niño “especial” y para él he realizado software educativo durante los últimos años, mi web se llama “La web de Antonia Ortega”, les dejo el enlace:
http://www.webantoniaortega.com/
Un abrazo para Darío y sus padres, mucho ánimo, y para delante, para atrás, ni para tomar impulso.

muchas gracias por escribir esto tengo un niño de 2 años con paralisis cerebral y lee estas cosas me hace mas fuerte y tener mas fe en que todo va a estar bien con mi bebe que si bien va a tardar en caminar yo se que lo hara con el esfuerzo y dedicacion de toda la familia :)

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The Harry’s team: This is a classic business story I have ever heard!!I have been enjoying each and every line you wrote there.. Very much informative and useful to the aspiring entrepreneurs. Many people fail to successfully launch a campaign despite having great products and people.. this is an eyeopener for all businesses in the digital world..@Tim, We wonder how and where you get the success stories of businesses.. Truly amazing.. No wonder why people visit your website/blog repeatedly.Thanks a ton!!SamLikeLike

Brilliant Insights. M going to use couple of insights while launching my product!!LikeLike

Do you have proof of that? Would be pretty eye opening to see that their success was mainly due to the expensive pressLikeLike

Tim and Jeff – wondering what your thoughts are about ‘off the shelf’ product launch/ splash/ recruitment platforms like launchrock and unbounce?LikeLike

Awesome thank you! I look forward to implementing these ideas. Ill let you know how it goes!!!LikeLike

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First of all, thank you for contributing this article (and to Tim Ferriss for posting it). I found it very helpful.Because I am always curious as to the other factors involved, would you be willing to elaborate on any other advertising you used during the pre-launch phase? You mentioned no PR push (which is interested and runs counter to a lot of advice you see coming out of YC and other startup advisors, although understandably also counter to you “ground-up” referral campaign). Still, really no Google AdWords, no social ads, no AdRoll or similar? Thanks again for writing this article. ~Elizabeth ChabeCEO, High Touch CoursesLikeLike

Awesome post. Very eye-opening for someone who isn’t too savvy with coding and garnishing thousands of emails.LikeLike

Curious if you considered making it “invite only”? We are launching a new concept and discussing the pros/cons of creating exclusivityLikeLike

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Guys,Love this write-up. One thing I noticed in the copy that two links are missing.In this paragraph you have the following text:>>When a referral—say, a friend of that first user—comes to the site using a unique link, we save it as a cookie we can use to find the email address responsible for the referral. For the engineers out there, you can see our engineering team’s explanation of the code here. As for the code itself, check it out here.Yet both of the links that say “here” and “here” are not linked. Would love to see those links. I know that the code itself was linked above by Tim in the sidenote, the Github link…but the explanation by the engineering team was not – unless it is further down in the article, which I haven’t finished reading yet. So if it is, I apologize in advanceLikeLike

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First of all, thank you for contributing this article (and to Tim Ferriss for posting it). I found it very helpful.Because I am always curious as to the other factors involved, would you be willing to elaborate on any other advertising you used during the pre-launch phase? You mentioned no PR push (which is interested and runs counter to a lot of advice you see coming out of YC and other startup advisors, although understandably also counter to you “ground-up” referral campaign). Still, really no Google AdWords, no social ads, no AdRoll or similar? Thanks again for writing this article. ~Elizabeth ChabeCEO, High Touch CoursesLikeLike

Many thanks Tim and Jeff from Harry’s for the great story and launch. It would be interesting to see how such a thing could be pulled off in Europe with multiple languages, sales taxes etc.Tim, would be great to hear some international stories as well from time to time.LikeLike

All of my team has printouts. Homework before our 8:30 meetingThanks Tim!LikeLike

Thanks for the GREAT article! Very informative. I will definitely put these strategies and tactics to use on my future projects.LikeLike

Guys,Love this write-up. One thing I noticed in the copy that two links are missing.In this paragraph you have the following text:>>When a referral—say, a friend of that first user—comes to the site using a unique link, we save it as a cookie we can use to find the email address responsible for the referral. For the engineers out there, you can see our engineering team’s explanation of the code here. As for the code itself, check it out here.Yet both of the links that say “here” and “here” are not linked. Would love to see those links. I know that the code itself was linked above by Tim in the sidenote, the Github link…but the explanation by the engineering team was not – unless it is further down in the article, which I haven’t finished reading yet. So if it is, I apologize in advanceLikeLike

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Love the open source sentiment of this article. Do you think that this rewards tactic can work on luxury products as well? Luxury products wouldn’t be able to give away products, but could offer a discount? As this is less tangible, it feels less rewarding to me. What do you think?LikeLike

Great post! The links to the engineering teams explanation of the code do not work however. Would love to see that!LikeLike

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Durante más de 100 años la comunidad científica mantuvo un intenso debate sobre el origen y significado del altruismo hasta que en la década de 1.960, el biólogo William D.Hamilton creó una fórmula matemática que relacionaba el altruismo con el grado de parentesco entre el que da y el que recibe. Desde aquí nos proponemos poner a prueba esa ecuación al mismo tiempo que descubrimos a personas e iniciativas que luchan por sacar adelante causas sociales.