Augusto Odone

By Andres Trevino

October 29, 2003 + English 1 Comment

I became aware of his efforts yesterday. I saw the movie “Lorenzo’s Oil” yesterday afternoon on TV. I heard three years ago about this movie but I didn’t want to see it because I thought it had a tragic ending and we’ve had our share of tragic in the last three and a half years. We’re in the middle of our battle trying to find the source of Andys illness.
But it turned out to be more than inspirational and the movie does not have the expected tragic ending. On the contrary it shows Mr. Odone’s incredible parenting skills and what amazes me the most is the way you are are able to gather all of the Scientists together to talk about your sons condition. How productive!! We’ve contacted specialists from the UK, from France, the U.S. and Mexico but haven’t been able to put all of those minds together in one place.
Things are so similar here that it felt as if I knew some of the movie’s dialogs: “This condition is x-linked, you need genetic counseling”, “We don’t have an answer for that, it will be the first time its done”, On the phone: “Are you a provider or a doctor?”.
We should all do the same for all the different conditions that cause suffering in children. I try to explain this as “Extreme Parenthood”, something like extreme sports. If every “Extreme Parent” does its share then we may be able to guide Scientists better.
Here’s part of the letter I wrote to Mr. Odone:
I’m a 31-year-old parent writing to you from the Family Center at Children’s Hospital Boston; here Doctors are taking care of my 3-year-old son Andy. We are originally from Mexico but my wife Ana Paulina and I decided to move to Boston where we found the necessary medical care resources to keep my son alive.
Andy is our only son and he has incredible strength and patience that have helped him overcome a great number of infections including infection in his blood (sepsis), on his central nervous system (meningitis), on his bones (osteomyelitis), on his colon (ulcerative colitis), on his skin, on his eyes, on his lungs (pneumonia) and others. It seems that no one has ever seen or experienced this type of primary immune deficiency that has kept us taking care of him in hospitals for more than 477 days.
Today Andy is stable, and with the help and research of more than 75 Doctors ans Specialists from Children’s Hospital Boston, Harvard Medical School and with the collaboration of Ohio State University, University of Iowa, Instituto Mexicano del Seguro Social and the National Institutes of Health, we know that Andy has a mutation on the fourth part of a gene called “NEMO” (Nuclear Factor Kappa B Essential Modifier) that prevents a good response against virus and bacteria. He is the only person found with this specific mutation. The usual response is that “Additional studies should be done to pin point the effects of this mutation and to find a therapy that in the future may help other children with similar conditions”. But we haven’t found anyone with the same mutation. All we know is that my wife is a carrier of this mutation (x-linked mutation) and the maternal grandmother also is a carrier. And that the NIH is currently testing some of its patients for this mutation.
After all the innumerable tests and studies Andy has been through, Immunologists from Children’s Hospital Boston recommend a bone marrow transplant to substitute his immune system. We’ve learned that the immune system is a very complex web that is not yet completely fully understood. The immune system develops the most the moment we’re born when we are first in contact with bacteria and virus and in childhood when we receive vaccines. Andy’s bone marrow transplant will help him develop a new immune system that will allow him to live a normal life.
The bone marrow transplant will cure Andy. There is a 90 to 95% success rate experience in similar bone marrow transplant cases where the correct cell donor is found. My wife Ana Paulina is currently undergoing an in vitro fertilization procedure and with the help of Wayne State University we will do what is known as “pre-implantation genetic diagnose” where they run a test on one of the embryos cells to check if there is the NEMO mutation and to see if that embryo may turn out to be a compatible umbilical cord donor when she or he is born. We will know if we have a donor by the end of this week. The umbilical cord stem cells will be used on the bone marrow transplant. “You never know until you try and fortune favors the brave”.
I invite you to visit Andy’s website at the following Internet address: http://www.andy.org.mx. I’m trying to document our story; and to use the website to raise the funds needed for his bone marrow transplant. The aproximate cost for this procedure is 250 thousand dollars.
I address this letter to you first and fore most to congratulate you. I’ve been there and I admire your parenting skills. I need you to share your secret on how to make your story public. Did you write the story first and then contacted someone who became intrested on your story?
My objective is to “FIND NEMO”. We know that my son has this mutation but very little is known about its functions on the cell. I’ve been doing some fund raising through the website and family and friends to pay for the in vitro fertilization and pre-implantation genetic diagnose procedures. I think I can define this type of fund raising as “guerrila fundraising”. Our best product is “The Andy Calling Card”, a telephone prepaid card that allows “donors” to make telephone calls and at the same time help Andy.
This effort will carry us over to support further very ugently needed research on this condition.

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