Getting to Know Mr. Augusto

I guess I never knew quite what it cost. There were a few extras: wire fees, shipping charges, U.S. import duties and the like. Besides, I bought the stuff in Euros, and I always get confused by exchange rates. It seems that in December, 2009, it came to around $175 a bottle, which was enough for maybe 10 days, depending on how careful I was when I poured it. Whatever it was, it was pricey, it could be dangerous if not used properly and the diet was no fun.
My strategy was to keep taking it for as long as my body could stand it, hoping it stabilized the disease while I waited for the development of a better, curative therapy.
It had taken a bit of persistence and plenty of luck. But here I was. This was my experiment, and I felt fortunate to be in on it. No doubt in my mind, it beat what was in second place. At the same time, I was vaguely wary- I could look beyond its vile texture and taste, but it was potentially dangerous. I guess my biggest concern was, as an unapproved drug, who could know how scary this stuff really was? I did what I could to look after things in my one-man clinical trial. I kept close watch on my fatty acids to see that I was drinking enough oil, and if my diet was on track. My internist was skeptical about the whole thing; worrying over my platelet count, so I got those guys counted monthly. And there was more to think of. Due to the Oil’s potential to wreck my liver, I had its function checked out every few months. Lastly, I kept in touch with my doctors at Kennedy-Krieger. I expect it was awkward for them, what with me asking them all sorts of stuff about the illicit drug I was taking.
Yes, sir, it was evident that something needed to get done to make this potentially life-saving therapy safer, legal and more readily available. In June of 2010, I met a man who had dedicated much of his life to that end.
I had been trying to speak to Lorenzo’s dad, Augusto Odone for some time. Not sure why, just seemed right. We exchanged a few e-mails over the years, but they all seemed distant and not well-connected. My angle was completely self-serving; I knew that he had kept Lorenzo supplied for twenty-some years and I wanted to know how. Of course, this was short-sided. Here was a man that had gone against the grain of the scientific community and invented a therapy for his boy. There had to be a story here, but I was too focused on my own agenda to care. Very likely, this explains our vapid conversations. In any case, after I got The Oil, I lost interest.
By and by, I again thought about Augusto. Not him getting me the Oil this time, I just wanted to sit with him and hear his words. What kind of man was he? I wrote him a quick e-mail, letting him know that I would be in Baltimore, asking if he might come up and meet me. He was unable to make the trip, but I was welcome to come to his home in Fairfax, VA.

Published by bradleygillespie

I am just a guy with a disease called adrenomyeloneuropathy. I want other guys with the disease to see the good parts of disability. Not the gloom. Not the doom. Make sense?

3 thoughts on “Getting to Know Mr. Augusto

  1. My son has battled with a disease that apparently doctors In New England “can’t identify” and for so long I have been searching for any tips, as he’s 5 losing a lot of muscle tone, speach, seizures are getting worse, trouble with lower limbs, ataxic, and many other things!
    I came upon this article, honestly thank you

    Like

    1. I am so sorry. Sadly, there over 7,000 rare diseases, most with no cure. Many folks struggle for years and never get diagnosed. The National Institutes of Health has an interesting program that does nothing but try to diagnose hard to understand rare diseases. So far as pediatric neurological disease, I am a huge fan of the Kennedy-Krieger Institute, in Baltimore. If you ever need to talk, and are comfortable with it, email me: brad@marsbio.com.

      Many thanks for your note.

      Like

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