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Welcome to the world of the Vincent D'Onofrio obsessed - and a bit of real life thrown in.

Wednesday, May 26, 2010

Gene Testing

As most of you know, I teach a boy with a rare and degenerative genetic condition, ALD, the illness featured in the film Lorenzo's Oil. He was diagnosed too late, when the condition had already advanced too far for him to be helped. But his diagnosis meant that when things went wrong with his little brother, the doctors knew where to look for an answer. Today their story features in the Daily Mail newspaper, and here is the link to the online version:

It pretty well puts the rest of life into proportion when you see the situations some people find themselves in.


JoJo said...

What a tragic thing to have happen to one's family. I swear kids are real troopers when it comes to devastating diseases. I am ashamed of myself when I start squawking about a hangnail or a bumped knee/elbow, when there are kids in hospitals who stoically deal w/ their horrid illnesses.

One thing I didn't like about the article though, I really don't think that 'deaf dumb & barely able to move'. It's the 'dumb' part that I objected to. It's an old saying and I remember using it myself in the 70's and 80's, 'deaf dumb and blind'. But that 'dumb' label really does a disservice to people. Over here I think the accepted term is 'deaf mute'.

Eliza said...

Reading about families like that makes me very thankful that mine is relatively 'normal'.Laura's problems are nothing compared to what a lot of parents have to deal with..I really don't know how they cope sometimes..not sure I would be strong enough

SnarkAngel said...

Once again, science advances more quickly than the moral and ethical solutions to questions the advances themselves create.

val said...

JoJo, you are not wrong - and what is more, his hearing is the one sense that is unimpaired in Alex.

In the end, mem was just grateful for the publicity.

JoJo said...

Val - I left a comment under the story for the newswriter, asking him to please refrain from using 'dumb' in that manner. I should go back and see if anyone commented after I did.

val said...

Good for you, JoJo. People should be careful how they talk about those who cannot speak up for themselves.

That could be taken wrong, seeing that we are talking about those who cannot speak at all, but I know you know what I mean.

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