Have you heard the story of Lorenzo Odone? Lorenzo was born in 1978, and initially he was an enthusiastic and enthusiastic child. However, at six years old he had rather severe behavioral problems. The doctors diagnosed him with (adrenoleukodystrophy) ALD.
It is an uncommon, inherited disorder, which leads to gradual brain damage, adrenal gland failure, and eventually to death.
ALD is a disease, in which myelin sheaths near to neurons are ruined. Without myelin, it is not possible for neurons to conduct signals correctly, this causes brain damage along with seizures.
Instead of accepting that Lorenzo Odone would die within a matter of years, his parents Michaela and Augusto went on a incredible mission to discover a cure for his disease.
They reasoned that a way that they could battle the illness is by curtailing the levels of very long fatty acids, they developed oil that came from olive oil and rapeseed. Once the Odone's gave this oil to Lorenzo, it lessened levels of very-long-chain fatty acids in his blood, by blockading the enzymes that form them.
Augusto was desperate
"I was terrorized, I was shocked. Well, it is a death sentence."
"So I asked the doctor if I could read the medical papers. He said: 'Don't bother, you won't understand them'."
They persisted, clashing with specialists, doctors, and support groups, each one of whom were cynical that merely two average people could produce such a cure.
The long hours studying and researching paid off; the Odone’s invented a treatment to stop the progression of the disease.
The film Lorenzo's Oil, is based on their story, Nick Nolte plays Augusto and Susan Sarandon plays Michaela.
Lorenzo died in may 2008 the day after his 30th birthday.
His father said
He could not see, speak, or move on his own. He communicated by wiggling his fingers and blinking his eyes. His mind was intact and he enjoyed music and having people read to him. "certainly, he has good days and bad days, he is bedridden and he cannot eat more than through a tube… but his mind is still there. He likes that we read to him, that we play music for him and he knows who is around him".
Because Michaela and Augusto Odone (both of whom had no medical background) took action and were not passive they were able to prolong Lorenzo's life considerably.
Michaela and Augusto started a foundation which aims to end human suffering from demyelinating diseases, it is called The Myelin Project
This story is one which I find very inspirational, it shows now ordinary people with persistence can do extraordinary things.
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