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Breakfast is the most important part of the day for Vitor, born in Parana, south Brazil. As he fights against GM1 Gangliosidoses on a daily basis, a combination of fruits, along with a special ingredient keeps his health at its most possible. Unfortunately, this rare degenerative brain disease has no cure and causes the lack of a basic enzyme responsible for the digestion of dairy products and the reproduction of brain cells. In other words, his brain naturally dies without the chance to grow any more nerve cells. Vitor was diagnosed only at the age of 9, after countless exams. The diagnosis was given as a death sentence, as doctors gave him aproximately 6 months to live.
Adolfo, his father, was a mechanical engineer. He gave up his job and his profession to try and save his son. "At that moment, I had to make a decision", he says. "I could either watch him die a little everyday, or I could fight for his life and do something about this... I decided to fight". Out of a job, he headed to the Public Library on any spare time, and buried himself under books and the Internet, reading all he could from genetics to clinical medicine. After 8 months, one book had the answers... or at least an alternative.
From his studies, Adolfo found that it was possible to control the advance of GM1 by replacing the enzyme which Vitor could not produce. After being discredited by every doctor he consulted, he started another battle: the search for a laboratory that could produce the enzyme, anywhere in the world. He sent letters, faxes, emails to any institution he could find. Only one responded saying that a laboratory in Japan could have the enzyme in the form he needed. After getting in touch with Japan, a week later he had the enzyme ready in his hands, easily and affordable.
The enzyme can be manipulated by any homeopathic pharmacy into pills, free of any royalties to any pharmaceutical company. Vitor has been taking these pills for over nine years now, and even though the treatment is not 100% effective, the disease has advanced very little ever since. Vitor's father is no expert, but he believes anyone with lactose intollerance or suffering the same illness as his son should be able to benefit from this medicine. Today, Vitor is the only person in the world ever to survive GM1 Gangliosidoses over 11 years.
But Adolfo's dedication to his son did not come without a price. With the reduced income after giving up his job, Adolfo had to stop paying the mortgage on his house and came to he verge of foreclosure. He insisted that the bank reconsidered his situation, but they just wanted the house back. With no where else to go, he filed a federal lawsuit asking the bank to renegotiate the debt into more affordable payments, aledging he had "pretty good reasons" to stop all payments at the time.
Anyone involved in the case, from bank managers to lawyers, who listened to Adolfo's story became consumed with finding an alternative. The judge herself, Anne Karina Costa, came up with an outstanding solution. She remembered that the money the Brazilian government receives from pecuniary punishments is redirected towards assistentialist institutions all over the country. The only problem is that Adolfo, as a private citizen, was not considered an institution. Costa decided to personally file a request to consider Adolfo's life work towards his son as if it were an assistentialist project.
As you can guess by now, the request was accepted, and Adolfo was able to pay off the entire house with government funds. Despite of what Adolfo calls a "miracle", he also recognizes and thanks the involvement of everyone who helped his family. In his own words: "Either rich or poor, we all have financial problems. Either rich or poor, we all have health problems. Problems only change by the address, but they still are the same for everyone. What changes is our decision. Our attitude towards them is what makes the difference. Good decisions will only make the world a better place".
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