sad
Hi,
I am 39 with a 7 year old son whom I love to bits. We live in the UK. I watched the film "Lorenzo's Oil" many years ago in 1990. It made me cry. I do not normally cry. I am a scientist but in the mathematical disiplines so understand the nature of research. I am currently watching "Lorenzo's Oil" again as I write this mail. I am however shocked, from a quick internet search, at the lack of progress there seems to be in this area of research. Please someone tell me I am wrong and that there has been progress. This is so sad.
Steve
Posted By: steveb
Posted On: Feb 15, 2008 6:38 pm
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Re: sad
"Lorenzo's Oil" was very sad. I worked as a nurse at Johns Hopkins during the time research was being conducted under the direction of DR Moser. Sadly I took care of Dr Moser in his last days at Hopkins as well. What a great man as a person, father and one of the leading experts in this field.
Posted By: sunshine0000
Posted On: Mar 3, 2008 3:55 pm
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Re: sad
3 years ago the doctors at university of minnesota here in minneapolis (i am from miami, am here waiting on bmt for son) once again started doing transplants, they discovered using NAC a med used for tylenol overdose helped very much to reduce the inflammation on the brain and some symptoms prior to transplant. in my opinion and research they are the best in the world and the only ones doing anything of note.
Posted By: marinemomkerry
Posted On: Sep 18, 2008 7:14 pm
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Re: sad
Steve, I am the mother of a 22 year old who is now 17 years out from his transplant. He is medically stable, but has much assistance with day to day stuff. He still lives with us (Mom, Dad, younger brother), but we know he will one day have a place of his own. His biggest problems are with executive functioning skills, so problems with check book management, scheduling medical appointments, he has been unable to pass his drivers test etc. He is, however, very functional. I was recently told by Dr. Charnas that he is the only survivor of those boys who were transplanted back in 1991 at the U of MN under the care of Bill Krivit, Larry Lockman, David Brown, and Elsa Shapiro. Eric was also seen by Hugo Moser at John Hopkins. If ALD is caught early enough there is hope, but parents need to know that saving the child's life is probably the easy part compared to the life long struggle that follows after the transplant just to get their boys needs met by the special education system, SSI, medical assistance, housing etc. I hate to sound negative, but I can often see how unhappy Eric can be when he realizes his limited potential and what a struggle every day life can be for him. I look forward to the day that I no longer have to worry about who will keep him safe after I am gone. So every day we continue to look for community programs that will help him with his adaptive functioning needs.
Posted By: Cynthia
Posted On: Oct 28, 2008 8:25 pm
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