I bought and watched this 1992 film last week, even though Vincent wasn't in it.
A month or two ago I said I had been asked to teach a kid with ALS. I was wrong. He has ALD - adrenoleukodystrophy, the condition that little Lorenzo Odone had. It develops between the ages of 5 and 10, passed on genetically by mother to son, and is usually fatal within a couple of years. But when Lorenzo deveolped the illness in the early 1980s, his parents were determined to pursue a treatment to help their son recover.
Ultimately their research led to a blend of oils that helped to stop the destruction of myeline, the substance that allows the brain to send messages throughout the body.
Though it appeared to make improvements in Lorenzo, and at the end of the film the hope was expressed that he would recover speech and some movement, it was already too late for him.
But the oil does halt further deterioration, and Lorenzo lived to the age of 30, dying just over a year ago, the day after his 30th birthday.
My little lad is 16, and has already suffered from the disease for 8 years. His brother is also a sufferer, but was diagnosed early because of the older boy, and a bone marrow transplant and Lorenzo's oil are keeping him healthy.
My student can blink to signify yes or no. Other movements are mostly, though not exclusively, involuntary. He is such a brave young man.
As a nurse I see too much of this,. My heart aches for him and admires the work you do. You should be proud, I've found not everyone can deal with debilitating illnesses in people.
ReplyDeleteI echo Basric's sentiments. You are to be commended, Val, on your efforts. Hopefully, they will enrich the life of this young person and give him much hope for the future. Blessings to BOTH of you!
ReplyDeleteoh val what you do must be heartbreaking but at the same time amazing
ReplyDeleteWe do so take our health for granted don't we?!
ReplyDeleteGreat blog.....
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Vince
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