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The fats build up in the brain and cause the myelin sheath around brain cells to liquefy. The brain declines to the point of death within two years.
Augusto and Michaela Odone were not given hope for treatment but they were offered a place in a diet trial that cut out long chain fat foods. Instead of reducing the long chain fat in Lorenzo's blood it increased it. A doctor suggested immunosuppression with chemo- therapy for one month. This was devastating to Lorenzo, not helpful. After this the Odone's realized that they should not have put Lorenzo in the doctors' hands blindly and decided to educate themselves...
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