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Padrinos para
niños con OI

 
 
     
     
 

Lo que conté en Annecy

Durante el Congreso de osteogénesis imperfecta celebrado a finales de agosto en Annecy (Francia), tuve la oportunidad de presentar el programa de apadrinamiento. Éste es el texto original de la ponencia que tuve que improvisar (en inglés, disculpas por las faltas) y que fue traducido simultáneamente por el Sr. Katz, un intérprete con corazón de oro que también va a apadrinar a un niño:

My name is Maria Barbero. I currently live in Spain. I have a 10 year old son. My son has osteogenesis imperfecta.

My son’s case is very mild. He has had around 20 fractures, he suffers from some deformities and he has had some important surgeries. He is presently getting the biphosphonate treatment with success.

My son Pablo is a normal child within all the standards of the Western society. He is interested in Pokemon and wild animals, he likes school, but he rather plays computer games or Play Station, he loves the society of his friends and takes care of his two pets.

I also have a godchild. My godchild is also ten years old and he also has OI. He lives in Ecuador and he speaks Spanish, as my son does. But this is the end of any similarity between both.

My godchild Alejandro has suffered over forty major breaks during his short life, but he got his first pain killer last year, 48 hours after he sustained an open complete femur fracture. 24 hours was the time it took his mother to reach a telephone in the rural area of Ecuador where they live to call a friend for help. She cannot pay for a doctor.

When I first met Alejandro he was eight years old, but he couldn’t tell me if he liked school because he had never been to one. It was impossible for him to go to school by himself. Today, his older brother pushes his donated wheelchair every day over 4 Km of dirt road to the next school.

Needless to say, has never seen a computer nor a Play Station. They don’t even have electricity or running water at his house.

Alejandro needs badly surgery for his U-shaped femur, but his bones are so thin that no nail could fit into them.

He suffers from OI, but he also suffers from Dengue fiber, from a bad and insufficient nutrition and from all kind of hygienic problems that fleas and dirt can provide for.

Alejandro is only one example of the big amount of children of Third World countries with OI and without a future.

Because of the language and personal contacts with Latin American OI-societies, I am more aware of the situation of these children in countries of South America. In order to help this children to get a minimal medical treatment to cope with their needs and to prevent the pain that OI children without medical assistance suffer, a group of volunteers of the Spanish OI-List has organized a so called "Godparents Program" in collaboration with the Latin American OI-Societies that have asked for help.

The program works as follows: The country OI-Society prepares a dossier with information about children in extreme need. Children that cannot get medical treatment because of extreme poverty. They send this dossier to the coordinator of the "Godparents program". The coordinator and the volunteers try to find a godparent for the child, a private person or a family who will be willing to pay some kind of financial assistant to this child on a regular basis, in order to make able a medical treatment (biphosphonates or medicines).

The money is sent to the coordinating representative of the local OI-Society, who takes care of organizing the treatment for the child, and who makes sure that the money arrives to his destiny. No money is sent to the family or the child, although godparents and godchildren keep contact with each other, exchange letters or pictures on a private basis as often as they like.

The objective of this program is, as I tell, to provide a minimal regular assistance and necessary drugs to those OI children who have nothing. For us in Europe, to be able to buy an Aspirin whenever we need it is granted. The mother of my good child earns one dollar a day and she has five children; an Aspirin box costs 2,50. Also, no Aspirins for Alejandro.

The program is very new –we started it in May 2002-, but we already have five children on it. One in Ecuador, one in Mexico and three in Peru. I am sorry I cannot show you impressive pictures of those children now, but I can tell you that four of them have severe OI, one has hydrocephalus as well, and is retarded, three of them have been abandoned by their fathers and only two are going regularly to school.

Who are the godparents? Persons, like you and me. Friends of the volunteers, volunteers, one family who also has an OI child and would like to help another as their own... We are not rich people, and we give as much support as we can. The biphosphonate treatment of a Peruvian child costs 60 Euro every three months, 20 Euro a month. If one godparent cannot afford this sum, we try to find another sharing godparent, two godparents for a child.

We are very aware that our help is only one drop of water on a hot stone. We know that a godparent cannot pay for expensive surgeries not for weekly sessions of physical therapy. But still, provide for medicines and for some kind of help is good enough for the ones who have nothing.

Those children have bad luck. They have been born with a rare congenital condition. They have been born in a country without an established and working social and health system. More: they have been born in a poor family in a poor country. And in most of the cases, they are born in an illiterate and ignorant family who wont be able to fight for the rights nor for the health of their children.

My interest here is to make it clear to all of you, on this part of the ocean and this first-class world, that there are children exactly as our children that are carrying a miserable life because of OI and because nobody knows that they exist.

If you know of somebody who would be willing to help, if you would like to be the good parent of a Latin American OI-child with any support you can provide, please get in touch with me during lunch time or whenever you want. You can also e-mail me at osteogenesis@forolengua.com, or reach me anytime through the Spanish OI-Association AHUCE. If you would like to have more information in order to make up your mind for this project, please feel free to e-mail me. I will be more than happy to answer to your questions and write to you with explanations. We are still at the beginning and also need volunteers who would like to collaborate with us with their work, writing dossiers and looking for possible godparents among their family and friends.

That’s all I wanted to share with you. I didn’t mean to talk about solidarity or justice because I am not good at great words. I just wanted to inform you about the situation of OI children like yours and mine, who are suffering because they cannot afford what is normal for us. I though you might want to know this.

If you have any questions now, I will be happy to answer them.

Thank you very much for your attention.

Annecy, August 31. 2002

Maria Barbero

padrinos@osteogenesis.info

http://padrinos.osteogenesis.info/

 

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