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Daniel, vivir a contrarreloj

29 febrero 2012 - 6:00 - Autor:

Daniel, el lunes pasado.

“Imagínate que a tu hijo le adosan una bomba al pecho, le ponen un contador a cinco años y te dicen “Tienes cinco años para desactivar la bomba”, Ahora, pide ayuda a quién quieras y búscate la vida. Ese estrés, esa angustia son las sensaciones que como padre vives”. El padre es Emilio, la madre, Cristina, el niño, Daniel. Los tres están metidos en una carrera contrarreloj para buscar una solución a la enfermedad que sufre Daniel, Síndrome de Sanfilippo.

El Síndrome de Sanfilippo es una enfermedad degenerativa con “consecuencias devastadoras para el Sistema Nervioso Central“, tan devastadoras como que la esperanza de vida no va más allá de la adolescencia. Es una enfermedad lisosomal, provocada por la ausencia de enzimas cuya función es trascendental para el organismo.

Catalogada como enfermedad rara, ya que se da un caso por cada 50.000 personas, Sanfilipo se metió en la vida de Emilio y Cristina desde que hace un año Daniel, que ahora tiene cinco, pasó a ser una de las 41 personas diagnosticadas con el Síndrome en España.

El hachazo les llegó tras muchos meses de dudas y frustración porque no terminaban de encontrar respuestas a muchas preguntas. La casualidad quiso que tras un golpe y una visita de urgencias al hospital de la Zarzuela, una neuróloga que sabía de la existencia del Síndrome se interesara por Daniel y algunos de los rasgos que presentaba: distensión abdominal, cejas más pobladas de lo normal, ciertas dificultades de aprendizaje, de expresión oral…

Cuando no sabes lo que le pasa a tu hijo es estresante, pero cuando te dicen que la enfermedad no tiene cura es todavía más estresante.

Entonces, ¿cómo asume una pareja que su único hijo, un niño que está razonablemente bien, tiene una esperanza de vida de apenas 10 o 15 años?

Una cosa es que no haya una cura y otra es que no haya gente con el conocimiento suficiente, y que el conocimiento de la ciencia está muy avanzado como para no tener una terapia; pero esto no despierta el interés de las farmacéuticas o las administraciones públicas.

Emilio y Cristina han decidido luchar, dejarse hasta el último aliento para conseguir una cura para su hijo y para todas las demás personas que están en su misma situación.

No sabes muy bien cómo enfrentarte a esto. A través de la redes sociales tienes una ventaja muy importante: puedes organizar un movimiento, si lo quieres llamar así, en todo el mundo. Nosotros en los primeros meses de diagnóstico fuimos capaces de hablar con todos los médicos de referencia del mundo, desde Canadá, hasta Reino Unido. Empezamos a movernos con asociaciones de EE.UU, Canadá, Francia…

Al final es un grupito de investigadores, de asociaciones y de afectados… te conoces. Esto es algo que hace diez años hubiera costado viajar por medio mundo, y cartas y llamadas de teléfono.

Daniel está ahora en una fase aceptable de la enfermedad. En la hora que compartí con ellos en su casa descubrí a un niño cariñoso y muy sociable, encantado de ofrecer sus trenes y sus juguetes a un extraño.

Los trenes y Daniel, preparados para cenar.

A Daniel le quedan cinco años, cinco años hasta que empiece el deterioro más severo.

No nos damos más de cinco años. Es el tope que tenemos. Si queremos cambiar algo, tenemos cinco años.

Ahora mismo ya se está ensayando clínicamente, en Amsterdam y Manchester, con el Síndrome de clase A: la prueba consiste en introducir la enzima de la que carecen los enfermos a través de un cateter en el cerebro. Los ensayos deberían funcionar y continuar con la clase B, la de Daniel.

Para acelerar al máximo los avances sobre la enfermedad, Emilio y Cristina empezaron a trabajar con Team Sanfilippo, una organización estadounidense; pero, para hacer más fácil la captación de fondos para la investigación decidieron crear en junio de 2011 la ONG Stop Sanfilippo. Y desde ese momento, el vértigo se ha apoderado de su vida.

Él reconoce que están un poco sobrepasados, en varios sentidos: por el trabajo, por las horas que están echando para organizar eventos y conseguir fondos y, sobre todo, por el éxito, por la cantidad de gente que les está apoyando, amigos, vecinos y, sobre todo, gente desconocida, gente que se ha comprometido al cien por cien con su causa.

Es un proyecto que ha ilusionado a la gente, no sabría decirte por qué. De mis vecinos lo entiendo, les conozco, sus hijos juegan con el mío…pero de gente que no conozco de nada, me encanta, es una de las mejores sensaciones que tienes con esto. No saben quién eres, ni qué vas a hacer, y te ayuda desinteresadamente. Y eso en la situación en la que estamos.

Emilio tiene las cosas muy claras, sabe que él y Cristina tienen que ser fuertes y valientes para ayudar a su hijo.

Si queremos ser útiles a nuestro hijo tenemos que ser capaces de manejar el miedo, la frustración, el estrés, la ansiedad. Porque, sino, no seremos útiles para él ni para nadie. La esperanza que tiene mi hijo no se la podemos dar nosotros, ojalá yo tuviera el conocimiento para hacerlo, pero sí podemos influir lo justo como para cambiarlo. De eso estoy seguro. Sí podemos hacer que si hay algo, traerlo a España antes, si hay un grupo investigador que está a punto de conseguir una cura, darle la financiación necesaria.

Con el dinero reunido en 2011 ya han apoyado a unos investigadores australianos. Y ahora, la ONG tiene dos grandes eventos en los que Emilio ha puesto muchs horas y muchas esperanzas. Por un lado, el 11 de marzo, un partido de baloncesto entre ex-jugadores de Real Madrid y Estudiantes, con la participación de actores, cómicos, magos…Y el 15 de abril, una carrera popular en Las Tablas (barrio de Madrid en el que viven).

Un trauma como este lo cambia todo. No puede ser de otra forma. La vida de Emilio y Cristina ha cambiado para siempre. El golpe es tremendo, pero las enseñanzas que les está dejando este viaje han cambiado su forma de mirar al mundo.

Vives en un mundo en el que tienes un buen trabajo, te compras una casa en un sitio que te gusta, todo va bien, la familia, los amigos, eres una persona feliz y vives en un mundo más o menos perfecto. Las cosas que les pasan a los demás, no te pasan a ti, las enfermedades, quedarte en paro, los accidentes… Eso a ti no te pasa, le pasa a los demás.

Esto te hace ver una realidad muy diferente: todos somos vulnerables y nos pueden pasar muchas cosas. Y también te hace ver que, afortunadamente, hay mucha gente que no es como tú, hay gente que sí se preocupa por lo que le pasa a los demás.

Cristina, Emilio y Daniel han creado un movimiento imparable. No se piensan rendir, aunque entienden que otros padres hayan asumido la enfermedad al comprobar que los tratamientos no llegan y los niños se hacen mayores.  Emilio también es consciente de que, en cierto sentido, es un privilegiado, él puede intentar ayudar a su hijo y a otros chicos.

Tengo trabajo, recursos, contactos… hay mucha gente que no tiene esto y que a lo mejor está en paro, hay unos dramas tremendos.

Van a aprovechar todo lo que esté a su alcance para parar a Sanfilippo y aunque su gran miedo es no llegar a tiempo, se agarran a una probabilidad.

Del mismo modo que la probabilidad de que ocurra esto es muy pequeña, pero nos ha pasado; la probabilidad de conseguir una cura a tiempo también es pequeña, pero puede pasar.

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Muchísimo ánimo y fuerza, familia, que sé que no os falta. Daniel, estoy segura que todo volverá a la normalidad y esto quedará como un episodio más del pasado, que supiste superar.
Todo mi cariño, solidaridad y amor para vosotros.

Ánimo Daniel y familia!! Resulta dificil pensar en cómo afrontrar con entereza una situación tan dura. Ojalá que la “lucha” tenga éxito y esta historia tenga un final feliz.

Emilio y Cristina, soy vecino de Sanchinarro y soy corredor popular te dire que en la carrera que ahí estaré por Daniel y por niños que padecen esta enfermedad. Mucha fuerza y amor para los tres.
Un saludo.

¿No hay un número de cuenta bancario al que poder donar algo?
Gracias
un saludo

ANIMO FAMILIA LO CONSEGUIREIS POR TODO EL ESFUERZO QUE ESTAIS HACIENDO, LO MERECEIS.
DANIEL ERES GUAPISIMO NO TE MERECES ESTO.
ME ENCANTA COMO LOS PADRES AUN CON UN DOLOR TAN GRANDE SABEN SUPERARLO E INTENTAN HACER LO QUE SEA POR CONSEGUIR UN TRATAMIENTO O UNA CURACION PARA SU PEQUEÑO.
TENEIS UN GRAN VALOR POR ELLO OS VA A SALIR BIEN TODO.

NO TODO EL MUNDO TIENE TANTA VALENTIA.
SUERTE.

Hola,
Teneis todos los datos aqui, incluso los lugares de donacion

http://www.stopsanfilippo.org

Podeis contactar con emilio aqui
emilio@stopsanfilippo.org

Hola Álvaro, en la web de la asociación se puede encontrar un número de cuenta (aunque no es sencillo)

http://www.stopsanfilippo.org/ayudanos/haz-un-donativo/

Un saludo

Soy vecina de Sanchinarro, acabo de leer la historia y estoy muy emocionada, os deseo todo lo mejor y que sepais que ahí estaré, en la carrera popular, en el corazón de la misma porque pertenezco al grupo de la ADH, Asociacion deportiva Hortaleza y nos vamos a encargar de que todo salga a la perfeccion, mi corazón está con vosotros.

Un besazo enorme.

conozco de cerca a la famila, y solo puedo decir que es admirable ver como los padres de Dani no se rinden, sus ganas y su fuerza, una lección para todos los que les conocemos. Espero que todo el esfuerzo tenga fruto y Dani consiga una vida larga y con calidad, Dani es un ángel!!

Hola, sé que fundación seur apoya proyectos como el de Daniel, si conoceis a la familia como decís, decidle que se pongan en contacto con ellos y seguro que encuentran apoyo.
Un saludo y mucho ánimo.

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Sobre el blog

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.