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A Request for Help Funding the Parent Project: Received from Argentina

 

This request was received from a person in Argentina, The Center feels this is a heartfelt request and would like visitors to the site to read and consider the contents of this letter. 

English Version

 

A los Padres, parientes, amigos o conocidos de niños que tienen Distrofia Muscular de Duchenne: Este es un correo masivo dirigido a Ud. que le interesa y conoce esta enfermedad cruel y terrible.

Soy un padre como tantos que cuendo va a tener un hijo dice: "que sea sano" y así pensé que había ocurrido con Maximiliano, pero con el correr del tiempo, sus actos físicos no eran normales, se caía, se movía demasiado al caminar, le costaba levantarse del suelo; Consulta médica local: diagnóstico equivocado. Consulta más específica: análisis de laboratorio, biopsia, diagnóstico definitivo: DISTROFIA MUSCULAR DE DUCHENNE. La tragedia, el llanto, la dezasón, decenas de consultas, todas con las mismas respuestas, intentos de buscar ecos favorables de tipo espiritual, sanaciones milagrosas (en las que aún continúo pensando), la desesperación hace generalmente equivocarnos, sobrecargando al niño hasta la saturación.

¿Por qué ocurre todo eso que seguramente a ustedes les ha ocurrido algo parecido? Por  DESCONOCIMIENTO, porque la gente común nunca supimos lo que es una Distrofia Muscular de Duchenne y ni hablar de su tratamiento, nunca vi un artículo en un diario, ni oí por televisión ni por radio y de pronto se nos cae encima para convivir con nosotros para siempre.

Los que tenemos la suerte de poner tener internet, podemos ir más allá de nuestras fronteras y averiguar qué pasa en otros países y entre otros casos pude ver que al menos hay una organización formada por padres, que es la "Duchenne Parent Projects", encargados de reunir fondos para la investigación, ahí convergen padres, médicos, fisioterapeutas, todos detrás de la sanación definitiva.

Concretamente, esta carta tiene por finalidad, hacer el intento en Argentina de hacer algo para juntarnos, comunicarnos, ayudarnos los unos a los otros, contarnos nuestras experiencias, tratar de reunir fondos y hacer conferencias, tal vez ayudar a alguien en desventaja, invitar a médicos extranjeros, asistir a conferencias internacionales, ayudar a los centros científicos internacionales, en fin, tener protagonismo directo, inmiscuirse en el tema, decididamente no quedarnos sentados esperando a que otros hagan, HAGAMOS NOSOTROS.

Personalmente tengo buenas relaciones con gente de "Duchenne Parent Projects U.S.A.", seguramentealguien de ustedes más que yo, unámonos y aprovechemos su experiencia, ayudémonos entre nosotros, ayudémoslos a ellos y ellos lo harán con nosotros.

Si ustedes comparten mi propuesta háganmelo saber, cuanto antes hagamos algo, mejor nos sentiremos, por el bien de nuestros hijos.

Mis datos son:

Raúl R. Serra

Domicilio: Sarmiento 407

C.P. 2424 - DEVOTO (Córdoba)

Teléfono: 03564 - 481324

E-mail: serra@solsoft.com.ar 

Muchas Gracias.

 

English Version

Courtesy of the Spanish Embassy in Copenhagen Denmark

To the parents, relatives, friends or acquaintances of children suffering from Muscular Dystrophy:

I am a father just like others that when his child is about to be born thinks “as long as it is a healthy baby”, and that is what I thought when Maximiliano was born, but as time went by we could see that his physical movements were not normal, he fell, he moved too much while walking, it was hard for him to stand up when sitting on the floor. A local medical check gave the wrong diagnosis, a more specific check: a lab analysis and a biopsy gave a definitive diagnosis: Duchenne´s Muscular Dystrophy.

The tragedy, the tears, the frustration, tens of medical checks, all with the same result, attempts to find some kind of spiritual comfort, a miracle cure (of which I still think about). We often make mistakes while in despair, putting a big load over our kid´s shoulders, almost reaching saturation.

Why does all this happen? You might have experienced something similar...

 Because of ignorance, because we, as common people, never knew what Muscular Distrophy is nor what the treatment is like, I had never seen an article in a newspaper or a TV or radio program on the subject, and suddenly it all falls on our heads and we have to live with it for the rest of our lives.

We who are lucky to have access to the Internet can go beyond our geographical borders and search for information in other countries, and among other cases, I came across an organization created by parents called “Duchenne Parent Projects”, which aim is to collect money for research. Here converge parents, doctors, physiotherapists, all looking for a definitive cure.

To be precise, the purpose of this letter is to try to do something in Argentina to unite ourselves, to communicate, to help each other, to share our experiences with one another, to try to collect money and organize conferences, maybe to help somebody who needs help, to invite foreign doctors, to attend international conferences, to assist international Scientific centers, in short, to play an active role, to know more about the subject and definitively, not to be seated on our chairs waiting for others to do it for us. Let's do it ourselves.

 

Personally I have a good relationship with people from “Duchenne Parent Projects USA”, surely one of you have even better connections, let's unite and use this experience, let's help each other, let's help them and they will help us.

If you share my views on this proposal, let me know. The soonest we start doing something the better we will feel, for the sake of our children.

 

My data:

 

Name:     Raul R. Serra

Address: Sarmiento 407 – C.P. 2424 – Devoto – Córdoba – Argentina

Phone:    +54 3564 481324

E-MAIL:   serra@solsoft.com.ar

 

Thank you very much

 

 

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