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Adrenoleukodystrophy
Family & Parenting / 7:58 PM - Saturday May 10, 2008

Adrenoleukodystrophy

My friend's nephew has just been diagnosed with Adrenoleukodystrophy. It the Lorenzo's Oil disease.

He's only 10 and things look really bad.

Has anyone got any experience with this? It's sort of related to parkinson's I guess.

Update: May 10, 2008.
Thank you for the prayers. His name is Tommy.

- Asked by llafsroh, An Intellectual Guy, Male, 36-45, Boston, Science / Engineering

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I haven't had any experience with it. but i just want to wish the best to his family. I know how hard it is to have an ill family member with no end in site. And the only advice i can give is take it one day at a time and enjoy as much of everyday as they can. I'm sure it must come as a shock to them and they best thing they can do at this point practically is get all the information available and talk to whoever they can about it.

Again, i wish them the best of luck.

- Response by misspixie, An Alternative Girl, Female, 18-21, Artist / Musician / Writer

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they made a movie of it and in the movie there was a cure

- Response by An Alternative Girl, Female, 26-28, Fashion

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its more like M.S. and i am going to be praying for him. my father had MS before he passed. its scary one day he couldnt feed him slf the next he could feed him self and not see. the only thing i know to do is pray.

- Response by j3s5e, A Rebel, Male, 26-28, Retired

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I am so sorry to hear about this little boy. God's Blessings to him & his family.
It is a very rare disease and it affects males.....unfortunately the prognosis is very grim....I will pray for a miracle!

- Response by nightingale226, A Trendsetter, Female, Who Cares?

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I will put him on our prayer list at church...

- Response by barbb, A Thinker, Female, Who Cares?, Who Cares?

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I'm afraid I don't have anything constructive to offer. I just wanted to say I'm very sorry to hear this, and I wish your friend's nephew well.

- Response by justpassingthru, A Thinker, Female, 46-55, Financial / Banking

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i have never heard of it, but i will keep tommy in my prayers. so sad, and at the young age of 10 yrs old.. god bless him and his family and may god comfort them in this matter. sencerely... margie

- Response by mburgos, A Cool Mom, Female, 36-45, Philadelphia, Home Maker

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My advice is to find a good support group online or in person. I help manage a new support group http://www.livingwithal d.org or you can find one on facebook. Stay strong.

- Response by A Guy Critical, Male, 66 or older

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