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Post by alisonzmom on May 21, 2006 21:02:03 GMT -5
My 27 yr old cousin has just found out that her 3 sons ( ages 2, 6, & 7) have all been diagnosed with a disease called Adrenal Leukodystrophy. It is a genetic condition that is inherited almost exclusively from the mother as it is on the X chromosome. The disease was the subject of the movie "Lorenzo's Oil" about 15 years ago. Tragically, by the time a child is symptomatic it is considered terminal and there is virtually little treatment once a diagnosis is made. Her middle son has been severely affected in a frighteningly short time..... in the last 3 months he has become wheelchair bound, has almost completely lost his sight, speech and hearing. So far the other two boys are asymptomatic and will be treated by a combination of mostly preventative measures.
She is such a strong kid and a great mom....... I just pray that she has the strength to watch her son slowly fade away, all the while not knowing if the same fate lies in wait for her other two sons......
Thanks,
Barb
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Post by ValerieC on May 21, 2006 21:06:30 GMT -5
Wow...not much else to say. I'll pray for her.
Valerie C
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Post by Ericsmomma on May 21, 2006 21:23:44 GMT -5
That is heartbreaking....I pray she will have the strength to face this unbearable trial...keep us posted.
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Post by CC on May 21, 2006 22:52:49 GMT -5
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Post by momofrussell on May 22, 2006 8:57:00 GMT -5
OH Barb... how sad for your cousin I will be sending prayers to her and her boys.... A.
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Post by ALLISA on May 22, 2006 9:01:10 GMT -5
That is one of the saddest posts I have ever seen here ......no one should ever have to go through that. Many thoughts and prayers to her and your family as you struggle through this. Allisa
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Post by caz on May 22, 2006 9:12:49 GMT -5
So so sad,thoughts and prayers to all x
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Post by updowns on May 22, 2006 16:30:22 GMT -5
That is so sad, my thoughts and prayers are with your cousin, you and all your family.
Stella
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Post by Emilysmom on May 22, 2006 19:47:08 GMT -5
HUGS to you Barb, and to your sweet niece. I can't believe she is going through that! I'll keep her in my thoughts and prayers. Susan
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Post by MB on May 22, 2006 19:48:43 GMT -5
God bless her and the boys.
mb
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Post by laurasnowbird on May 22, 2006 22:27:52 GMT -5
Awww, Barb, I am so sorry to hear the news about your cousin's children. Losing one child would be more than I could bear, but the uncertainty about the fate of the others would make me crazy. I am praying for strength for her.....and for her other sons. It must be so hard for the seven year old to see what is happening to his brother, my heart breaks for all of them!
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Post by Cbean on May 23, 2006 8:01:03 GMT -5
I will add them to my prayer list!!!!
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Post by Jackie on May 23, 2006 8:26:32 GMT -5
wow..that is a big load to carry...she will be in my thoughts and prayers...
Jackie
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Post by Claire on May 23, 2006 20:30:34 GMT -5
God bless your cousin and give her the strenght. Prayers going your way from Canada.
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Post by codysmom on May 24, 2006 5:56:16 GMT -5
My thoughts and prayers are with her and you thats a terrible thing to go through starr
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