16-11-04: A mom from Kindergarten La Salle
(anonymous) will sponsor Daniela Z. of Peru.
She has donated the first 20 Euros for the girl
which will be used for a month of pamidronate treatment. Welcome,
and thank you!!!
Small godparents with big hearts: these are
three, four, and five-year-old children attending the preschool
Kindergarten la Salle in Madrid. Their parents and teachers
have started campaigning for funds to sponsor little Javiera
With these funds, Javiera, who already depends on
a godparent for his pamidronate, will receive the physical
therapy treatment that he really needs due to his last
We thank the La Salle preschool community and
invite everyone to visit their site at:
12-11-04: Santiago Bello donated 240 Euros
for Christopher of Peru to cover the boy’s pamidronate treatment for
10-11-04: Pirkko Justander (representing
Mr. Jouko Karanka, Ms. Satu Rantanen, Ms. Seija
Rantanen (mother of Satu) and Ms. Kati Wink) donated 120
Euros for six months of pamidronate treatment for Ricardo T.
10-11-04: Pirkko Justander, representing
Ms. Elisabet Hästbacka, Ms. Pirkko Justander,
Ms. Merja Kylänlahti, and Ms. Pinja, donated 120 Euros
for six months of treatment for Melani H. Thank you!!!
11-11-04: We received 21 Euros from Patricia
López for Christian David of Peru. Thank you,
October 2004: We received 187 Euros from the Association Suisse
Osteogenesis Imperfecta (Schweizerische Vereinigung Osteogenesis
Imperfecta – SVOI) for the pamidronate treatment of Liliana
of Ecuador. Thank you so much!!!
Money Transfers November 9, 2004
-75 Euros from Mechthild Lehning for Juan José G.M.
(August to October)
-200 Euros from María Rosa for Ricardo Alonso R.C.
(July to October)
-75 Euros from Gunther Brimmer for Luis Ángel (August
-125 Euros from Angelika Brebeck for María José P.
(August to December)
-445 dollars from Linda Pompeo and Patricia for
Yesidi Naomi N. (240 dollars will go to a year’s treatment
of pamidronate for the girl, 45 dollars for 3 months of vitamins
and 160 dollars for three months of physical therapy.)
-60 Euros from Granada for Kelly Nicole
-63 Euros from Patricia López for Christian David
(August to October)
Total: 598 Euros + 445 dollars
-120 Euros from Yvonne Hagelstein for Brisiera (June
-120 Euros from Anna Silja for Erika (June to November)
-100 Euros from Laura Munoa (30 are from a friend of hers)
-100 Euros from Linda for Abigail B
-300 Euros from Ángeles and José María Tartaj for
Erik M. (a year’s treatment of pamidronate)
-20 dollars from Cecilia Kerstins for Emilio A.
-60 Euros from Gloria Álvarez for Bernardo
-60 Euros from Miguel Fernández for Wilson (physical
-24 Euros from selling 2 shirts
Total: 884 Euros + 20 dollars
1.- Before Lucía Trávez arrived in Spain, María Barbero
transferred 128 Euros for physical therapy for Alejandro
2.- During the Conference of Osteogenesis imperfecta (Congreso
de Osteogénesis Imperfecta) that took place in Alicante, María
Barbero personally handed Lucía Trávez 900 Euros and 40 dollars
to allocate in the following manner:
-830 Euros from Alicia for treatment and physical therapy
for Raquel C.
-60 Euros from Gloria for Kevin Y.
-10 Euros from María Barbero for Alejandro S.
-40 dollars from Cecilia Kersteins for Emilio A.
08-11-04: We welcome a new godparent. He
is Santiago, the father of Raquel Bello who is the godparent of
Gustavo of Ecuador.
Santiago joins the program to sponsor Christopher, a new boy from
the Peru Association of Osteogenesis Imperfecta (AOI-Peru).
Lucía Trávez, the president of the Ecuador
Foundation of Osteogenesis Imperfecta (Fundación Ecuatoriana de
Osteogénesis Imperfecta) attended the
Conference of Osteogenesis Imperfecta (Congreso de Osteogénesis
Imperfecta) that took place this year in Alicante.
Lucía brought us very sad news: At the beginning
of this month, a little girl named Samantha passed away. She
was sponsored by the Ecuador Foundation with godparents Miguel Ángel
Samantha suffered through many weeks of
dehydration and lung/breathing problems. Because of the
accumulation of mucous in her throat, she could not breathe or
swallow, so it was necessary to perform an operation to make an
opening to feed her through a tube.
Her general weakness throughout the days of her illness, the
infection that she caught because of the surgical intervention, and
the beginnings of pneumonia were too much for her.
She was three years old.
We regret very much to have lost Samantha. The Ecuador Foundation
was not informed of her death until its secretary made a weekly call
for an update on the girl’s condition.
When Samantha had her last session of treatment in September, she
was so weak that her pamidronate could not be administered,
resulting in her hospitalization.
We thank Miguel and Montse, who have decided very generously to stay
with the program and sponsor Wilson for the physical therapy he
18-10-04: The couple Tartaj-Ascaso
donated 300 Euros to cover a year’s treatment of pamidronate and
other necesities for Érik.
06-10-04: Linda Edward donated 100 Euros
for the treatment of little Abigaíl of Ecuador. Many
06-10-04: María Rosa Piquer donated 100
Euros to spend on pamidronate treatment for Ricardo Alonso of
Peru. Thank you!!!
04-10-04: Patricia and Linda Pompeo of
the United States, godparents of Naomi of Peru, have donated
240 dollars will be spent on a year’s treatment of pamidronate
for the girl, 45 dollars for 3 months of vitamins, and 160
dollars for 3 months of physical therapy. Many thanks!!!
02-10-04: We received 60 Euros from Granada
Pérez for Granada’s godchild Kelly Nicolle of Peru. The
money will be spent on three months of treatment for the girl. Many
01-10-04: Alicia Barbero donated a sum of
830 Euros for her godchild Raquel C. of Ecuador. 240
Euros will be spent on pamidronate treatment; 60 Euros for other
complications of the child’s health and 530 Euros for a year of
physical therapy for the girl.
Raquel was one
of the girls that Dr. Fassier operated on in January of 2004,
so this great support of Alicia through making physical therapy
possible is very needed for her rehabilitation. Many thanks,
23-09-04: AHUCE, the Association of Bones
of Crystal of Spain (la Asociación Huesos de Cristal de España) has
given us approval to begin a drive for used orthopedic materials
among the people attending Conference XI (XI Congreso) that
will take place in October.
These materials will be shared with the OIFE (Osteogenesis
Imperfecta Federation Europe) and the AOI-Peru.
We send thanks to AHUCE!!!
20-09-04: We have two new godparents, both from
Linda Pompeo and Patricia will sponsor Yesidi Naomi.
Welcome to the program!!!
20-09-04: Through her participation in the
Helsinki Conference where she presented the godparent program to
the members of the Osteogenesis Imperfecta Federation Europe (OIFE),
María Barbero returned with good news:
Sponsorship of Liliana M., of Ecuador will be through
members of the Swiss association represented by Vanja
Ricardo T. and Melanie H., both of Peru, will the
godchildren of Pirkko Justander and Pirkko’s daughter.
María was also successful in motivating various people to help
A third video made by the OIFE. This was filmed during the
visit from Dr. Fassier. It was made about surgery to implant
Various projects of the OIFE and the AOI-Peru. More details to
11-09-04: Emilio A., of Ecuador, has a godparent.
Cecilia Kersteins, grandmother of a boy with OI, will be
Emilio’s godparent, donating 20 Euros a month to cover his
pamidronate treatment. Welcome, and many thanks!!!
24-08-04: In the “Numero 2” version of the
publication “Voces de Cristal” of AHUCE, online version, an article
written by María Barbero was published about the godparent program.
The link to access the article is
http://voces.ahuce.org in the seccion called “Espacio Social”.
20-08-04: María Rosa Piquer will sponsor
Ricardo Alonso R. of Peru. She will donate 100
Euros every three months for a year’s pamidronate treatment and
physical therapy sessions. Thank you, María Rosa.
Chart of upcoming pamidromate treatments in Ecuador:
José David B
Maria Paula G.
Marco Vinicio M.
Ana María Y.
In addition, the children will be examined by Dr. Jorge Estrella (ophthalmologist)
and by Dr. Castillón (othorhinolaryngologist).
Chart of upcoming pamidromate treatments in Peru:
Luis Alberto S.
Josue G. (1a treatment)
Melani H. (1a treatment)
Rosa del Alba Q.
Juan José G.
Luz Clara E.
Luis Angel S.
27-08-04: We received 124 Euros from Angélika
B. to spend on five month’s treatment of pamidronate for her
godchild María José P. of Peru. Thank you!
27-08-04: We received the monthly donation from
Yvonne and Anna of Germany for their Ecuadorian
godchildren, sisters Érika and Briseira M.
27-09-04: We received 25 Euros from
to be spent on monthly pamidromate treatment for
Luis Ángel A., of Peru. Thank you,
03-08-04: We received 25 Euros from Pelle
and Norbert to be spent on monthly pamidronate treatment for
Juan José G. of Peru. Many thanks!!!
10-08-04: Rosi Chang informed us of the dates
when pamidronate treatment was administered to the following
02-February-04: Kelly D. and Luis
S. (administered in the city of Chiclayo)
15-March-04: Maryorie A. and Juan
27-May-04: Milagritos M. and Nicole
09-June-04: Rosita del Alba Q.
25-June-04: Christian C.
19-July-04: Maryorie A., Lely
Ll., Paul Ch., and Juan José G.
09-August-04: Luis Angel S., Ricardo R. and Luz
María Barbero hosted a group of foreign exchange students in her
house from Longmeadow High School (Massachussetts). They have one
year before graduation and they study Spanish.
During their time off in Spain they have dedicated themselves to
translating the chronicles on this page and the subtitles of the DVD
made by the OIFE.
Owen Fenton and Javi Cossey: Many thanks for the work
you have done.
10-08-04: Gloria has undergone a new trip to
Ecuador and Peru.
The details of the transfers that took place are as follows:
Euros from Adriá for Patricio S. (three months of treatment)
Euros from Carmen Ugarte for Jefferson (6 months of treatment +
Euros from Raquel Bello for Liliana M. (single donation)
Euros from Susana and Isabel for Jonathan (3 months of treatment)
Euros from Miguel Fernández for Samantha (3 months of treatment)
Euros from Dr. Parra and Mercedes for Nicolás (6 months
Euros from Gloria Álvarez for Bernardo (3 months of treatment)
The sum was 945 Euros (1,121 dollars).
Euros from Rosemarie Ostarek for Luz Clara (physical therapy)
Euros from Sres. Van Welzenis (wheelchair for José Luis R.)
Euros from Joaquín and Genoveva for Luz Clara (6 months of
Euros from Tere Ahedo for Rosa del Alba (a year of treatment)
Euros from Patricia for Christian David (2 months of treatment,
June and August)
Euros from Eva Schmitt for Paul Isaac (a year of treatment +
Euros from Angelika Brebeck for María José (a month of treatment)
228 Euros from Araceli and José
for Ronald Valle (a year of treatment)
Euros from Raquel and José María for Milagros Marcaquispe (four
months of treatment)
Euros from Ana Becerra for Marghory (6 months of treatment)
Euros from Tina Parcero for Luis Alberto (a year’s treatment)
The sum was 2,270 Euros (2,686 dollars).
10-08-04: We received 21 Euros from Patricia
López for her godchild Christian David of Peru.
24-07-04: We received 300 Euros from Tina
Parcero to spend on a year’s pamidronate treatment and various
needs for her godchild Luis Alberto of Peru.
July-04: We received 350 Euros from Eva
Schmitt to spend on a year’s pamidronate treatment and other
necesities for treating Paul Isaac of Peru. Many
July-04: We received 250 Euros from Jörg
Wollemberg to cover the Fosamax medication and a year’s
rehabilitation for Irma of Peru. Thank you!!!
15-07-04: We have new
godparents, all of whom are Germans. Pelle and Norbert Lehning will
sponsor Juan Jose; Eva Schmitt will be the godmother of Isaac Paul,
Angelika Brebeck will sponsor Maria Jose; Jorg Wollenber will
sponsor Irma and Pelle´s father will sponsor Luis Angel. All of the
children are from the AOI-Peru. Many thanks and welcome!!!
09-07-04: Rob van
Welzenis and his wife Lidy, honorary presidents of the
European federation of OI, donated 150 Euros which, with the
100 donated Euros from the Ostarek couple in May of 2004,
will be used to buy a special wheelchair for Luz Clarita of Peru.
09-07-04: We received 120
Euros from Anna Becerra to be used in her goddaughter
Marghori´s 6-month pamidronate treatment. Thanks!!!
Parra and Mercedes Viudes deposited 125 Euros
to cover for his godson Nicholas´s (from Ecuador) 6-month
pamidronate treatment. Many thanks!!!
07-07-04: Gloria Alvarez
deposited 60 Euros to cover Bernardo of Equador´s 3-month-treatment.
02-07-04: We received 100
Euros from Linda Edwards to cover the expenses of
various necessities of little Abigail from Ecuador. Thanks!
02-07-04: We received 100
Euros from Maria Rosa Piquer to cover part of
the pamidronate apllication fees of Luis Enrique from
and Genoveva deposited 120 Euros for the 6-month-pamidronate
treatment of Luz Clarita from Peru. Thanks!!!
Bello will donate 150 Euros so that Irma, a 15-year.old
adolescent from Peru, can complete her yearly fosamax treatment. We
remember that Gloria Palomeque had transferred 120 deposited Euros
in June of 2003 for her godson Jose Luis (Who already receives
treatment at Shriner´s) so that he was able to begin his weekly
treatment with alendronate. Many thanks, godmothers!!!
Ugarte had donated 150 Euros to be invested in Jefferson of
Ecuador´s 6-month-treatment with fosamax. Many thanks!!!
and Isabelle deposited 120 Euros for Jonathon of Ecuador´s 6-month
treatment with pamidronate. Thanks!!!
28-06-04: We have new
godparents that have joined the program. Joaquin
and Genoveva of Malaga, parents of Paula,
a baby with OI, will be the godparents of Luz Clarita of Peru.
deposited 60 for the trimestral treatment of her godson Patricio
from Ecuador. Many thanks, Adria!!!
10-06-04: We have
received 21 Euros from Patricia´s monthly delivery for
Cristian David of Peru. Many thanks!!!
01-06-04: We have
received 240 Euros from Tere Ahedo for her goddaughter
Rosa del Alba´s yearly pamidronate treatment.
and Alois Ostarek donated 100 Euros to be invested in
some child of the program that is in need of money. Thanks!!!
31-05-04: Gloria has
transferred to the AOI-Peru – received Mrs. Rosa Chang – and to
the FEOI – received Mr. Paul Guerron – the following values:
Peru: 201 Euros (230 dollars by the exchange rate of the day)
Tere Ahedo (for
Rosa del Alba, 6-month pamidronate treatment), 120 Euros.
Kelly Wicole, quartery treatment with pamidronate), 60
Patricia Lopez (for
Cristian David, montly pamidronate treatment), 21 Euros.
Ecuador: 1,755.50 Euros (2,086 dollars by the exchange rate
of the day)
100 Euros from
Rosi Weider (in order to finish Wilson´s yearly treatment)
trimonthly with pamidronate.
40 Euros from
Gloria Palomeque for Kevin (bimonthly treatment with
240 Euros from
Maria Angeles Lebret for Josue (annual pamidronate treatment).
120 Euros from
Hans and Veronica for Juan David (6-month pamidronate
300 Euros from
Pablo Badia for David Alejandro (yearly pamidronate
treatment and 60 more Euros for various expenses of the
150 Euros from
Laura Munoa for Wilson (with the 100 deposited Euros from
Rosi Weider complete the cost of the boy´s yearly treatment.)
120 Euros from
Maria Barbero for Ronnie (6-month. pamidronate treatment)
120 Euros for
Maria Barbero for Alejandro Solorzano (6-month pamidronate
122 Euros of
picked up donations from Rosi Weider.
100 Euros from an
anonymous donator to found a fellowship. We have already
spoke of this information.
203.53 Euros from
Jean Daniel to cover Javiera´s braces expenses.
40 Euros from
Anna for Erika´s twice-monthly expenses.
40 Euros from
Yvonne Hagelstein for Briseira´s twice montly expenses.
25-05-04: We welcome
Pablo Badía as a godfather. Pablo worked with the SOS Ecuador
program and from now on will sponso David Alejandro of Equador. He
deposited 300 Euros to cover the yearly pamidronate treatment and
for various necessities of the child. Welcome and many thanks,
18-05-04: Rosi Weider
attended some communions in the United States and has asked the
children to donate part of their money for the children that are
located in Ecuador. She has attained 200 dollars that she will
deposit upon her return to Germany. Soon she will send us the
addresses of the families in order to meet and to thank the kindness
of each child.
López transferred the first 21 Euros that she will deposit every month for
Cristian David of Peru. Many thanks!!!
May 2004: The godparent
program celebrates its two-year anniversary. Many thanks and
congratulations to all that made part of this marvellous project!!!
14-05.04: María Ángeles
Lebret transferred 240 Euros for Josué´s yearly pamidronate
treatment, of the FEOI. Thanks, Ángeles!!!
10-05-04: Today we will
continue to give good news. Ángeles joined the godparent program.
She will be Josué´s godmother, an Ecuadorian boy. Welcome Ángeles!!!
10-05-04: Hans and
Verónica, Juan David of Ecuador´s godparents made a transfer of 120
Euros to pay for the 6-month pamidronate treatment of the boy. Many
10-05-04: We welcome a
new godmother. Her name is Patricia López and she will sponsor
Cristian David of Peru.
May-04: We have finally
reunited the works of the godfathers with the Peruanian Association
of OI (AOI-Peru)
The new president, Mrs. Rosa de Chang, has sent us extremely
complete news about the children´s situation. The news has already
been sent to each godparent. The treatments will from now on be with
intravenous palondromite except for the cases where the children can
Once the treatments start we have the intention to make a transfer
to the AOI-Peru as quickly as possible. For this reason we ask the
godparents to please make their deposits in the following days. Also,
we hope that to the side of their name they will also write the name
of their godchild.
20-04-04: Tending to the
fact that her godson José Luis from Peru is receiving treatment in a
special center and doesn’t need her economical support, his
godmother, Gloria Palomeque, will for now be in part Kevin´s
godmother, an equadorian child.
19-04-04: We have
received 60 Euros from Gloria Álvarez which will be
invested in the treatment of her equadorian godson, Bernardo.
Weider, a German friend of María Barbero, donated 100 Euros to
help the children of the FEOI.
25-03-04: María Barbero
received a letter from the Shriners Hospital of Montreal by regular
mail in which they ask Denise´s parents, a Mexican girl with OI,
that they send a series of documents (X rays, among other things) so
that they can admit the girl into the center as a patient. The
letter has the date of the 18th of March.
We are extremely happy about the many possibilities of the treatment,
rehabilitation, and attention with which Denise will receive upon
being admitted to the Shriners.
22-03-04: Jean Daniel deposits
250 dollars as a part of the payment of the
braces that Javiera, her goddaughter, ought to use to continue with her
rehabilitation, later of the operation done by Dr. Frasier.
15-03-04: 1,640 Euros
were sent to Mrs. Lucía Trávez- an equivalent of 1,967 dollars.
The money corresponds to the following godparents and will be
invested in the following treatments of their godchildren.
Dr. Romero (donation):
750 dollars (606 Euros)
Dr. Glorieux (for
Marco Vinicio): 243 Euros
(for Briseria): 60 Euros
Anna (for Erika):
Nimet (for Ana
María) 300 Euros
Carmen Ugarte and
Miguel (for Jefferson): 120 Euros
Raquel Bello (for
Gustavo Vera): 120 Euros
Patricio Salazar): 60 Euros
We received and
sent 60 donated Euros from a person whom we have yet to
08-03-04: Adriá deposited
60 euros for the half-year treatment of Patricio of Ecuador
06-03-04: Dr. José
Romero, professor of pediatrics at the Medical Center at the
University of Nebraska, and colleague of Dr. Horacio Plotkin makes a
donation of 750 dollars for Ecuadorian children. Lucía Trávez will
tell us soon in what the FEOI will invest it in.
17-02-04: Nimet, a new
godmother from Switzerland will sponsor Ana María, an Ecuadorian
girl. She deposited 300 euros to cover the annual treatment with
pamidronate and other necessities of the girl.
06-02-04: Carmen and
Miguel donated 120 dollars to invest in the 6-month treatment with
fosamax of Jefferson of Ecuador.
Collantes deposited 120 euros to inv est in the 6-month treatment
with pamidronate of his godson Gustavo, of Ecuador.
17-01-04: Dr. Glorieux,
of Canada, who in December revealed her intentions of sponsoring the
boy Marco Vinicio, made a donation of 300 dollars for the annual
treatment with pamidronate and various expenses of the treatment for
14-01-04: We are
shipping to Quito, the following sums, to be received by Lucía
Trávez, president of the FEOI.
290 euros from Mr.
Katz for his goddaughter Javiera(annual treatment with
300 euros from
Julián Font for his god-daughter Abigail(annual treatment
125 euros from
Dr. Parra and his wife Mercedes for their godson Nicolás
(semestral-treatment with pamidronate)
60 euros from
Gloria Álvarez for her godson Bernardo(trimestral treatment
60 euros from
Miguel Angel Fernandez for his goddaughter Samantha
(trimestral treatment pamidronato)
120 euros from
María Barbero for her godson Alejandro(6-month treatment
40 euros from
Yvonne Hagelstein and 20 euros from Anna Silja for the
treatment of Briseira and Erika
50 euros from
Teresa Ahedo and another 50 euros from her mother María
Teres to contribute to the operations of the children from
Quito which will take place next week
600 euros from
Alici Barbero to partially pay for the costs of the femoral
nails and the operation of Raquel
100 euros from
Emilio Albi, husband of María Rosa Piquer, who has shipped
this to contribute to the operations in Quito
In all there are 1,815 euros. The company has made the
transfer, converting it to 2,246 dollars.
09-01-04: María Barbero deposited 120 euros to cover the semestral treatment of
her Ecuadorian godson
has made an entry of 600 euros, to be invested in clvos
intramedulares that Raquel needs for the operation that Dr.
will do in Ecuador in the next few days.
01-01-04: Starting this
month Hans and Veronic of Germany will sponsor Juan David. The boy
whom they were sponsoring is going to live in Spain with his parents.
Lucia Travez gave them information of people and of AHUCE so that
the parents of Luis Felipe can contact them to continue with the
treatment of the boy.
01-01-04: We received 290
euros from Jean Daniel Katz for the annual treatment with
pamidronate of his goddaughter, Javiera of Ecuador.