Saturday, July 17, 2010

TOO GOOD TO BE TRUE (5 month old)

When Santi was almost five month old, one of my dearest girlfriends sent me an email that only had an attachment that looked like a wine bottle label, I thought she made a mistake. When she called me in the afternoon to tell me that she spoke with a very knowledgeable doctor in Buenos Aires (the capital of my home country) about Santiago’s condition and that he told her that he had a treatment for us. My heart stopped. She said that he was a very well respected doctor and he had been helping her family for years. The wine label attachment that I could not read was his name with all the medical specialties he practices and there were many!. After my initial excitement, I asked my girlfriend if she told him specifically that Santi was diagnosed with JXG (if she actually used the right name?) and she said yes! I told her that I was astonished because all the doctors we had talked with in the U.S. (two very well known dermatologist and one excellent oncologist) said that there was no treatment and we just needed to wait. She gave me the doctor’s email address and said that he would be expecting my email. I thanked her deeply because even if it did not work, she took the time and the effort to make the connection and I knew she had only our best interest at heart. As I was writing the email to the doctor, it occurred to me that he must have thought that Santiago had a systemic version of JXG, and therefore, he would most likely recommend chemotherapy or radiation. I also thought that maybe he was into homeopathic or organic medicine, which I was open to. I finished the emailed, attached several pictures of Santi’s lesions and hit send with a lot of hope and fear of disappointment. The doctor emailed me that same afternoon and confirmed that he had treated cases of JXG and he could help us. He said that his treatment would have Santiago lesion free between 4 to 6 months at the latest! and he warned me that without treatment the lesions not always regress on their own. He then said that if I agreed to the treatment, I should send him $3,000 via Western Union. I froze! I was thrilled to imagine that the JXG nightmare could disappear in months instead of years, but I could not help noticing his lack of treatment details and the very high price (especially considering that the Argentinean peso/dollar exchange rate is 4 to 1). I emailed him back asking for more specific info about the treatment and I received a response the following morning. He said that the he uses Quantec Technology, Quantum Physics applied to remote healing and gave me a few links. I read all of them and I could not understand how it worked. Nonetheless, I knew someone that would, a very smart and successful Physics and Material Science Professor, my husband. When my spouse came home that afternoon, I told him the full background of the situation. He looked at me with love and some sadness and said: “Babe, this sounds like a scam. There is not such a thing as remote healing with Quantum Physics”. I repeated to him that the doctor was very respected and known in Argentina and that our friend’s family had been seeing him for years. It could not be a sting!. On my insistence, my husband agreed on reading the links and emailing the doctor requesting more in-depth information. We indicated this time that Physics is my husband's area of expertise and ask the doctor not to spare any technical details. We received another email full of links and with the mention of important universities such as Princeton and University of Granada. Once more, I could not make sense of these articles, my English was not good enough to read this level of science, so I asked for my husband’s help. “It is not your English babe, this is just mumbo-jambo using physic words but it does not make sense to me either. Plus, I know the guys at Princeton and this is not what they are working on. We gotta report this doctor to the Argentinean authorities!. I told him that I would not do that because of my friendship. I was devastated that the magical solution was shattered. The following morning still not ready to let go, I emailed the doctor for a last chance, asking if there was a guarantee for his treatment. As usual, he replied pretty quickly and this time he was furious! He said that Americans are used to get guarantees for everything, but his treatment was not like a pair of shoes that could be returned to the store if they did not fit. He was offended by my questions and he told me that he was an honorable doctor who has helped many people during his career and he had nothing to prove. He even went further and said that he understood now why Santiago got JXG. It was my husband’s and my bad energy that has caused it. So now, in order to heal Santiago, he would need to treat us too! He finished his email saying that he would keep the same price for the treatment of the 3 of us, just because he wanted to help our baby and he repeated the address where to send the money to. I was full with rage, I wanted this guy in jail now!. After a few days to calm down, I called my girlfriend to let her know what happened. She was very surprised by the doctor’s conduct but still swore to me of his honesty and capabilities. She trusted him with her own kids and her faith in him was so profound that she told me: “..but if you were rich, and you could spare $3,000 easily. Wouldn't you do it? I know I would”. After thinking a few seconds I replied: “No, I would not. If I had that money to spare, I would give it to Dr. McCain at Texas’ Childrens Hospital and the Histio Heroes Research Fund that are conducting the first JXG Registry in the country. It will not be a magical solution or a quick one, but when they get it (and I know they will), it will be a true answer.

*In honor to the relentless work that Dr. McCain, Dr. Allen and their teams have done to find answers and cures to histiocytic disorders.

21 comments:

  1. I love the new website, great job! And I still think that doctor should be reported to the authorities.

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  2. Great website!!!! I think you did the right thing with the argentinian doctor. Thanks for all your effort to make this website works!

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  3. Maria, you are changing the world and bringing people together. This is a fantastic and wonderful project!

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  4. Mari! what a story of that doctor! it makes me wonder why someone will play with emotions like that! I cannot believe this doctor, makes me furious too. You and Roberto are amazing parents and all the research and educating of others that you are doing for Santi and other kids with JXG is really incredible.

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  5. My son had JXG from an early age . On his face and all over his body. His were up to 3cm across. His face was the first to clear up and you will be happy to know he has no scarring. He is now 13 and has very light scarring on his body where the lesions were. In the last few years these are slowly disappearing. One day at a time . All the best to you and your family. Brad (Australia )

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  6. I got JXG all over my body when i was only a few months old. I am 24 now and most of it has cleared up. The ones on my face have cleared up perfectly (except a few on my chin). The ones on my legs have faded, however the ones have my arms have not, they are still quite noticeable and puffy.
    I am still in search of a doctor to help me clean up the ones on my chin and arms.
    It was difficult for my parents to have a daughter with such a rare skin disease, stay positive and be patient, it will clear up as time progresses. I wish Santi all the best, and hope his clears up as well as mine did.

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  7. How is your son doing? Has it cleared up? The doctor in Texas was he able to do anything? I'm sorry if I'm asking so many questions I love my son so much and get so scared with this I go online all the time reading about this sometimes reading the worst stories over and over. I love it when my son sees me and he gives me the biggest smile I'm so scared for him to loose his eye sight or for it to affect his organs. The doctors I see are lost none don't know what to say. I went to see a new doctor last week and when he read what my son has he pulled out his iPhone to look it up, I just picked up my son and left. I need help finding a doctor who can help please if there is any advice you can give me I would greatly appreciate it. Feel free to email me at richardalcedo@yahoo.com
    Thank you

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