R.I.P. Lorenzo Odone 1978-2008

The man whose parents' battle to save him from a nerve disease was depicted in the movie "Lorenzo's Oil" died Friday at his home in Virginia, having lived more than 20 years longer than doctors had predicted.

Lorenzo Odone, who doctors had predicted would die in childhood, died one day after his 30th birthday, said his father, Augusto Odone.

Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents the disease -- caused by a genetic mutation that causes the neurological system to break down -- would lead to death in two years.

The disease leads to the accumulation of substances called very long chain fatty acids in cells, which damages the material that coats nerve fibers in the brain.

A study published in 2005, based on research with 84 boys, showed that a treatment made from olive and rapeseed oils -- patented by Augusto Odone -- can prevent onset of the disease's symptoms for most boys who receive an ALD diagnosis.

Odone plans to take his son's ashes to New York to mix them with those of his wife, who died in 2000. Then, Odone said, he will sell his home in Fairfax, Va., and move back to his native Italy.

(Taken from here.)

I remember seeing this movie shortly after it first came out when I was in high school. I watched it again years later, after having Syrina, and it spoke to me in ways that it never could have had I not had a child with special needs. I remember thinking to myself that if I knew of something that would make Syrina's life more full, more 'normal,' I would go to any lengths I had to in order to make that happen for her. I could finally relate to the stress, the frustration, and even the joy those parents went through, because I was going through similar emotions myself (and still do).

If there truly is a heaven, that family definitely has a special place on the best cloud there is.