Last week Lorenzo Odone died with 30 years, the patient who made known to the general public the effects of the genetic disorder known as "adenoleukodystrophy" (ADL) through the famous and emotional film "The oil of life”Starring Nick Nolte, Susan Sarandon and Zack O'Malley Greenburg.
Is it sad news? Well, it depends on how you look at it because at 6 years the doctors predicted only 2 more years of life and has survived 22 more!, That is, a lifetime.
Here we have already echoed minority diseases that not only cause pain in families but are also socially misunderstood and do not arouse commercial interest for pharmaceutical laboratories. These children suffer twice.
ADL reduces the patient to a semi-vegetative state by excess of fats in the blood, deteriorating in the medium term your neural connections. In spite of the bad medical auguries, Lorenzo's parents, Augusto and Michaela, initiated on their own a personal investigation that culminated in the discovery of a special diet that extended their son's life until thirty. The essential element of the diet was popularly known as "Lorenzo's oil"and, although the scientific community did not trust him, a study recently showed that it serves to prevent the onset of the disease in those patients susceptible to inherit it through the maternal genes.
Whatever extended and improved Lorenzo's life, it is clear that diagnosis should not be confused with prognosis and that the attitude of parents is decisive in the healing / quality of life of their children.
I hope Lorenzo's story is an incentive, an example and a hope for other children in similar situations.
