During the OI congress held at the end of August in
Annecy (France), I had a chance to present the sponsor program. The
original text of the presentation I had to improvise in English (I
apologize for the mistakes) follows below. It was simultaneously
interpreted by Mr. Katz, an interpreter with a heart of gold who is also
going to sponsor a child:
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
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
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
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
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 firstname.lastname@example.org,
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