October 2005 Archives

525,600 minutes ago Andy received Sofia's stem cells.

-Hace 525,600 minutos Andy recibió las celulas madre de Sofia.

A list of thank-you's,

-Una lista de agradecimientos,

If your name is not here and you believe it should be, thank you (send me an email to andy [at] andy [dot] org [dot] mx).

-Si no encuentras tu nombre y crees que tienes que estar en esta lista, gracias (mandame un mensaje a andy [at] andy [dot] org [dot] mx).

To the people that have taken care of Andy in the hospital (more or less in a chronological order):

-A las personas que han cuidado a Andy en el hospital (más o menos en orden cronológico)

-Gracias Vero por estar ahí con nosotros.
-Dr. Maya, gracias por enseñarnos que algunos doctores simplemente están muy saturados.
-Dr. Maulen, más o menos tenía razón, gracias. Gracias por enseñarnos que la gamma globulina no es cosa tan mala.
Dr. Kretchmer (Rest in Peace), thank you for saving his life on numerous occasions and at the same time teaching me the most important lessons of my lifetime. Thank you teaching me that "Absence of proof is not a proof of absence" and thank you for all the other phrases that kept me busy trying to find the diagnosis.
-Dr. Madrazo, gracias por tratar de entender esto.
-Dr. Martinez Natera, gracias por ser el primero en mencionar indirectamente condiciones genéticas.
-Enfermeras Hospital ABC gracias por la introducción a bombas y catéteres (pudo haber estado peor...)
-Dr. Sanchez gracias por sus cálculos y por enseñarnos que Andy podía recibir nutrición por las venas.
-Dr. Gimenez gracias por la introducción a la investigación médica básica.
-Dr. Torres gracias por haber estado ahí en Noche Buena y en Navidad en la sala de operaciones. Gracias por enseñarnos que tener un hoyo en el estómago (literalmente) no es tan malo.
Dr. Sokol thank you for the introduction to gastroenterology.
Dr. Gelfand thank you for teaching us that medical research comes in different languages.
-Dr. Melgoza gracias por ayudarnos a encontrar que los recursos de investigación médica en México no eran suficientes para ayudar a Andy. Gracias por decirnos que nos fuéramos.
-Dr. Vazquez, gracias por cuidarlo, y gracias por cacharme cuando me desmaye.
Dr. Nurko, thank you for your trust and thank you for always being there when we need you. Thank you for having very good hands. Thank you for talking on the radio about Andy.
Dr. Turvey, thank you for the first written diagnosis and thank you for your help with official letters.
Joanna Hedstrom thank you for your help with hospital bills.
Dr. Orange, thank you for your incredible mind. Thank you for your friendship. Thank you for discovering NEMO and thank you for the inspiration to create this website. Thank you for inviting us for dinner and thank you for Andy's 2nd birthday party. Thank you for being there in the ER when I was away and saving his life. Thank you for letting us know that there's someone else out there. And thank you for teaching us that there's always an option.
Dr. Geha, thank you for knowing who we are and for being there all the time. Thank you for letting us step into your office anytime and for answering emails so fast.
Nurse Ana Maria, thank you for teaching us how to take care of Andy.
Nurse Ruth, thank you for making us smile.
Nurse Aimee, thank you for teaching us that nurses also cry.
Dr. Gellis, thank you for helping us find about ectodermal dysplasia.
Thank you Mary Kaye Richter for answering our messages and referring us to Dr. Zonana.
7 East thank you for being our second home and for the introduction to Boston. Thank you for teaching us how to do intramuscular injections.
Carole F. thank you for your friendship and for listening to us.
To Parents of children who passed away while we were in the hospital, thank you for the creative spiritual influence. And to the Children who passed away while we were in the hospital, rest in peace.
8 East thank you for letting us paint the windows.
-Dr. Borovoy, gracias por mantenerlo a salvo.
Mr. Albater, thank you for teaching me that being in the hospital with Children is tougher than being a prisoner of war.
Dr. Zonana, thank you for finding NEMO.
Dr. Murray, thank you for the introduction to genetic tests using a buccal swab.
Dr. Bale, thank you for confirming the genetic diagnosis.
Vicki and Fred Modell thank you for telling us about transplants and thank you for all the invitations to the Red Sox games, dinner parties and boat trips. And thank you for all that you do for children with primary immune deficiencies.
Dr. Pai, thank you for being right. Thank you for following our story and for being right again, and thank you for knocking on wood.
Dr. Frank thank you for talking to us about genetics.
Dr. Harris, thank you for telling me I could be a doctor.
Dr. Hughes, thank you for your generosity and your explanations about pre-implantation genetic diagnosis.
Dianne Gates, thank you for all the in vitro fertilization medication vials.
Dr. Jain, thank you for knowing so much about NEMO.
Dr. Cardone, thank you for giving us more options.
Dr. Hardy thank you for implanting the right cells and advicing us to let them settle.
-Max Leonardo, gracias por las medicinas de fertilización in vitro. Y Lupita gracias por tu ayuda.
Renee Genovese, thank you for being so professional when talking about genetics.
Arden Hill thank you for teaching us that playing with food is not a bad thing.
Vicki Nahmad, thank you for introducing us to the school system in Massachusetts.
Shannon Hennig, Holly Suda, Leigh-Anne Porter, Laura Merl, Kim Deveau Dern, thank you for eating with Andy.
Elyse Topp-Poirier thank you for running the Boston marathon for Andy twice.
Brian Serroul thank you for running the Boston marathon for Andy.
Dr. Samuels thank you for teaching us about regular padiatrics.
-Jorge Luis d'Argence gracias por correr el maratón de Paris por Andy.
Dr. Verlinsky thank you for your generosity and for doing what you do.
Dr. Butte thank you for your friendship and for keeping us in touch with other families with primary immune deficiencies.
Dr. Lemon, thank you for saving his life.
Nurse Kelli, thank you for your friendship, thank you for making it fun and doing it right. Thank you for defying gravity and for putting a smile on his face. Thank you for running the marathon for Andy.
Dr. Sachs, thank you for treating us like normal people and thank you for reading all those emails.
Dr. Lehman, thank you for saving Andy's life and thank you for taking care of Sofia. Thank you for making it easier.
Nurse Maura, thank you for arriving just in time and for saving Andy's life.
Nurse Lissa, thank you for talking to me about gadgets in the middle of the night.
Dr. Callaway, thank you for making it fun, your political career is not over.
Nurse Robin, thank you for directing the World Series trophy to Andy's room.
Nurse Lissa P. thank you for teaching us that nurses also use skateboards.
Six West thank you for showing us the fun part of tough things and difficult moments.
To the Phlebotomists, thank you for trying your best.
To the people we've never met like Lab. Technitians, or Pharmacists who mix medications, thank you.
Thank you Mr. Cyr for letting my name be next to yours.
Thank you Bess for following our story.

To Andy's blood donors:
-A los donadores de sangre:
Mauricio Hernandez gracias, tienes muy buenas venas.
-Jorge Elliot gracias.
-Ana Jose Z. de Gonzalez gracias.
Children's Hospital Denver blood bank, thank you.
-Salvador Albino, gracias.
-Agustin Hernandez Aguirre, gracias.
Children's Hospital Boston blood bank, thank you.

To the more than 100 people who registered (or at least tried to register) as stem cell donors through a public registry for Andy thank you.

-A las más de 100 personas que se registraron (o por lo menos trataron de registrarse) como donadores de células madre por medio de un registro público por Andy, gracias.

And to the more than 80 people who registered through our own registry (via Fedex) and donated $80 to do it, thank you.

-Y a las más de 80 personas que se registraron por medio de nuestro propio registro (vía Fedex) y donaron $800 para hacerlo, gracias.

-A las voluntarias que cuidaron a Andy, Claudia, Ivonne, Carolina, Ana Jose, Myrna, Rocio, Male, Ana Jose Rosas, Dolores (Lita), Mariana, Rosa Elena and Alejandra, gracias.

Thank you to Andy's teachers at Lawrence School, NorthEastern and Burr.

Thank you Roberta for being Andy's tutor and for your friendship.

Thank you Mala for your help.

Thank you to our Family Members and Friends who followed the story, thank you for the messages of support and for your prayers.

-Gracias a nuestros Familiares y Amigos que siguieron la historia, gracias por los mensajes de apoyo y por sus oraciones.

-A mi Papá, mi Suegro and my Abuelo gracias por su apoyo financiero.

Opapa thank you for calling so often to see how we were doing. Thank you for visiting us.

To those of you who have a "I helped Andy" T-shirt, baseball cap, or flash light key chain, thank you. Or raffle tickets, bracelets, calling cards, golf balls and the ones who bought a bag of coffee or a box of peaches, thank you. And thank you to the sponsors of all the products.

-A las personas que tengan una camiseta "Yo ayude a Andy, gorra, lámpara llavero, gracias. O a quienes compraron boletos de la rifa, pulseras, tarjetas telefónicas, pelotas de golf, bolsas de café, o una caja de duraznos, gracias. Y a los patrocinadores de esos productos, gracias.

To the people who didn't buy anything but did send a donation, thank you.

-A las personas que no compraron algo pero si mandaron un donativo, gracias.

Special thanks to the person who bought a door through Andy's website (yes we sold a door through Andy's website).

Thank you Ricardo for all the autographs. And thank you to all the people who helped us find autographs.

-Gracias Doña Margot por su apoyo y por organizar la fiesta de cumpleaños de Andy en Tuxtla.

-Gracias Doña Soco por sus oraciones y por tener el cirio prendido.

-Gracias Victor por tu ayuda vendiendo boletos de la rifa y a todos los demás voluntarios que vendieron un total de novecientos noventa y nueve boletos. Nat, Pericles, Diego Ch. Ale d'A., Francisco Gonzalez, Antonio Mayer, Paty Piña, Ana Paula O., Maaike del Villar, David Castillo, Chendo V., Mimi Gomez, Male F., Fernando B., Maguis, Luz Ma. d'A., Alma Rosa, Jose Manuel O., Lucia F., Jerry Galvan, Marysela R., Eugenio S., Ileana, Kike, gracias. Gracias a Victor por hablar sobre Andy frente a cientos de personas.

-Gracias Carmina y Manolo por enseñarnos sobre transplantes, son muy fuertes!

-Gracias Victor por hablar sobre Andy en la radio. Y gracias por las ideas para reunir fondos.

-Gracias Maguis y Ana Jose por vender tarjetas telefónicas y a todas los voluntarios que vendieron tarjetas telefónicas. Y gracias a las personas que compraron las tarjetas telfónicas e hicieron llamadas.

Thank you to all the people who left a message at Andy's website.

-Gracias a todas las personas que dejaron un mensaje en la página de Andy.

-Gracias Don Alfredo y Lupita por su apoyo. Y gracias Lupita por el discurso tan bonito durante el bautizo de Sofia.

-Gracias Papá por hablar acerca de Andy frente a cientos de personas. Gracias por el apoyo espiritual. Gracias por llorar conmigo. Y gracias por tu carta.

-Gracias Mamá por leer este blog y gracias por hablar sobre Andy en el radio. Gracias por ser tan positiva.

I'm looking for a English to Greek translator.

If you know one who is willing to help translate a manual for families that go through stem cell transplants, let me know via email to the following mailbox,

andy [at] andy [dot] org [dot] mx

Andy preguntó hoy,

"Papá, porqué hay tantos huracanes?"

Es la época del año...

Es por la temperatura del agua...
Pelicula de la NASA aquí.

Es una parte importante del sistema de circulación de la atmosférica..

Encontre esto:
La palabra "huracán" utilizada en el hemisferio occidental procede del vocablo maya "hurakan", nombre de un Dios creador, quien, según los mayas, esparció su aliento a través de las caóticas aguas del inicio, creando así la Tierra.
Via Wikipedia (más):

Para quienes usan Google Earth:
Hurricane Wilma the Most Intense Atlantic Storm
Storm tracking tools
Global Clouds

Si aun no tienes Google Earth:

This is what I think:
This is just going around in circles.. Help is urgently needed for sick people who can benefit from treatments with these types of cells and researchers should have access to more resources.

This is what the headlines say:

Biologists last week revealed details of two techniques for deriving the cells that do not involve the destruction of a embryo.

The Koreans did therapeutic cloning back in May - Nucleus from donor cell is inserted into an egg stripped of its own genetic material.

'Ethical' concerns are too much for some. And as Nature reports religious groups in some countries have restricted research.
" In Germany, for example, the use of ES cell lines created since January 2002 is illegal and carries a penalty of up to three years in jail. And in the United States, federal funds for ES cell work is only available for a handful of cell lines derived before August 2001."

The sort of new techniques are:
1) From Rudolf Jaenisch and Alexander Meissner, MIT - Altered nuclear transfer - a gene in the patient's donated cell is switched off before the nucleus is transferred into a fertilized egg. The resulting egg grows into a blastocyst that won't be able to implant in a uterus.

2) Robert Lanza of Advanced Cell Technology - PGD in mice.

This is sort of new because Dr. Verlisky from the RGI clinic has been using this in humans for some time now..

Here's a graphic from The Times describing the PGD advantage:
Stem cell breakthrough opens way to ‘spare part’ tissue banks.

Dr. Fischer is an expert in genetic therapy.

My first message to Dr. Fischer was in October 23, 2001, he answered a day later October 24, 2001.

I found this article about a speech he gave at Children's Hospital Los Angeles and it has interesting information.

Source: Childrens Hospital Los Angeles

"If you want to better treat a given disease -- in our context, a primary immunodeficiency -- it's first absolutely crucial to understand as much as we can about the mechanism of the disease," explained Dr. Fischer. "So, for genetic disorders obviously it means to identify the gene -mutations of which caused the disease -- and then to understand what the protein encoded by the gene normally does -- what's its role -- so then we can start to think about potential therapeutics."

"One possibility for some of these diseases is the application of gene therapy," he said, "but this is fully based on our understanding the mechanisms of the disease. Then, of course, one should design the best way to add a normal copy of the gene into the cells which are abnormal. In the case of the diseases we are interested in -- the immune deficiencies -- these are the progenitors in the bone marrow which give rise to different kinds of lymphocytes."

He discussed approaches that have been used to treat these diseases over the years, such as bone marrow transplant, which has restored life to many but not all of these patients. Recent studies show that in some of the children who are 10 or more years post-transplant, the effect is being lost and they are becoming immune deficient again. This late loss of protective immunity may occur because they received the more "grown-up" cells that made T-cells for awhile, but they did not receive sufficient stem cells that can make T-cells for decades.

Read the complete article here.

Kelli Cole who was Andy's primary nurse during his stem cell transplant and she ran the Boston Marathon for Andy. Kelli and Matthew got married on Oct. 8th.

Here is her picture with husband Matthew,

CONGRATULATIONS!

If you want to donate to Children's Hospital Boston do it now.

Why?

On September 23, 2005, President Bush signed into law an expansive relief package for victims of Hurricane Katrina. Thanks to this special legislation, taxpayers will find it easier to support hurricane relief while also remembering their favorite charities.

Bottom line: there was an increase in the deduction limit.

Example:
Lets suppose that Carlos has an adjusted gross income of $200,000 and he made contributions to various charities amounting to $50,000 prior to August 28. Carlos then contributes an additional $150,000 in cash to Dr. Geha or Dr. Nurko at Children's Hospital Boston between August 28th and Dec. 31, 2005. Carlos will be able to deduct $200,000 in 2005, resulting in zero income tax. Prior to the increase in the deduction limit, Carlos would have been able to deduct only $100,000 in 2005, though the excess could have been carried forward for up to five additional years.

Raif S. Geha, MD, was one of the doctors who discovered the unique genetic mutation on the NEMO gene that causes Andy's PID. His center is working to determine the molecular basis of PID while setting standards for patient care. For more information on supporting PID research and treatment at Children's, contact Brandt Henderson in the Children's Hospital Trust at (617) 355-5342 or brandt.henderson@chtrust.org.

Samuel Nurko, MD, provides diagnosis and treatment for children with disorders resulting from abnormal motility of the gastrointestinal tract. To support the center or clinical research studies, contact Kathleen Corcoran in the Children's Hospital Trust at (617) 355-2370 or kathleen.corcoran@chtrust.org.