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YO TAMBIEN EMPUJO EL CARRO “IRONMAN LANZAROTE 2011″

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Me llamo José Carlos Ferré Pérez, y soy padre de María, una niña que nació sana y que cuando tenía 18 meses desarrolló una enfermedad minoritaria llamada Síndrome de Rett.

Este Síndrome es una enfermedad neurológica altamente incapacitante y que se produce en uno de cada 10.000 nacimientos de niñas vivas. La causa una alteración genética en el cromosoma X y que no viene precedida de antecedentes en ninguno de los progenitores.

De esta forma tenemos a María, una niña que hasta los primeros meses de vida era una niña normal,  y  que hoy sufre una incapacidad del 87%, según la última valoración médica.

Ella tiene innumerables patologías entre las que se encuentran, crisis epilépticas, apneas, episodios de autismo, así como otras patologías físicas.

El problema de las niñas Rett, es su incapacidad de controlar su cuerpo y su mente, imaginamos una orquesta con músicos de primera calidad, pero con un director que no puede dirigirlos, esto hace que cada instrumento suene descoordinadamente, e imposibilita una interpretación correcta.

Conocer mejor el Síndrome de Rett, es fundamental para mantener y mejorar la calidad de vida de estas niñas, y evitar así su deterioro físico y mental. Nuestra esperanza es mediante la investigación encontrar una solución a esta terrible enfermedad que les ha tocado vivir a unas niñas sin merecerlo. Pero solo investigando es posible.

CURRICULUM

Mi nombre es José Carlos Ferré Pérez, nacido en Valencia el 30 de Agosto del 1969. Tengo actualmente 41 años.
Estoy casado y tengo tres hijos, María, de 11 años, (afectada con el S. de Rett)  Cristina con 7 años, y Dani con 16 meses.
Trabajo como Técnico instalador  Electricista.

A lo largo  de mi vida el deporte ha formado parte de ella de forma muy importante, he participado en mas de 12 maratones, varias pruebas cicloturistas, travesías a  nado, y poco después en el mundo del triatlón, he realizado 4 Ironman, 5 triatlones media distancia, asi como multitud de medias maratones y triatlones de menor distancia, a lo largo de la geografía nacional.

Para mi familia y para mí, el deporte es algo mas, es una manera de vivir…
Un día por casualidad me lleve a María a entrenar conmigo, ella entonces sufría muchos episodios autistas, es decir de desconexión del mundo exterior. Pensé que tal vez a circular con su carro a una velocidad superior a la que lo hace cuando paseamos por el barrio, este hecho le haría estar más atenta. Mis sospechas se confirmaron, y ese día durante la media hora de rodaje estuvo conectada, la llamabas y  atendía,  se reía, y se fijaba en todo lo que iba viendo a su paso. Ese día se nos abrió una gran puerta, que sin duda no iba a desaprovechar.

A partir de aquí, un día corrí media hora, otro día más, y como un atleta cualquiera iba aumentando el tiempo de entreno con ella. Es curioso que durante todo el tiempo que ella esta conmigo corriendo, no sufre ninguna crisis, ni apneas ni nada parecido, al contrario, se ríe y ese día duerme mejor.

Llega un momento que esta tranquila en el sofá, y en cuanto llego yo, se pone inquieta, y cuando ve salir a su carro de correr del balcón sonríe y demuestra alegría. Todos estos indicios son los que me hacen pensar que a María le gusta acompañarme a correr tanto o más que mí.

Esto es importante pues ella tiene desde entonces una actividad, una vida activa, pese  a que vive condenada en un carrito.

Un día me propuse hacer el maratón de mi ciudad con ella. ¿Por que no? Seria capaz de demostrar  que los niños discapacitados existen, que se pueden y se deben hacer cosas con ellos, que tienen que tener una vida lo mas normalizada posible, daría a conocer la enfermedad desconocida de ella, y sin ninguna duda ayudaría a otros padres con niños con problemas (que hay mas de los que vemos) a que hay que tirar adelante sea como sea.

Ese día sucedió al final de la carrera algo que marcaría mi camino, y que me ha dado mas fuerzas a seguir con mi empeño. Al final del maratón, y ya en las pistas de atletismo, a unos 20 metros de la meta, un juez nos sacó literalmente de la prueba, con el argumento “carros no pueden entrar”  sin embargo y pese a todo María con una gran discapacidad realizo esos míticos 42 kilómetros de los que consta un maratón…Esto fue en febrero 2008. Existe  un reportaje grafico de esto, que podréis ver en el blog de María, titulado “Maratón Valencia 2008”.

A partir de aquí hemos recorrido y finalizado con todos los honores, 6 maratones, unos 12 medios maratones y mas pruebas de menor distancia juntos, y sin querer, formamos parte de una especie mito que con el eslogan “yo también empujo el carro”  somos invitados a realizar  carreras.

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