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- By Walter · New reply yesterday at 10:27 am
- Journal · 35 replies
- Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...
- By JOSHYSMOM · New reply November 29, 2008
- Discussion in Other leukodystrophies · 7 replies
- I have been told there are only 12 cases in the world of this leukodystrophy so far. does any one know any thing about it? My son was fine until about 2 yaers old and then he started falling alot. His ...
- By JOSHYSMOM · New reply November 29, 2008
- Journal · 5 replies
- MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy ...
- By johnpaulangelchild · New reply November 26, 2008
- Discussion in Living with a leukodystrophy · 19 replies
- I am a mother of a beautiful 10 year old boy who has this form of leukodystrophy, I would like to talk to someone who knows anything about it or anyone who has it....I just joined this website....so please ...
- By cintarire · New reply November 26, 2008
- Journal · 2 replies
- It has been 1 year since diagnosis, and I think this is the hardest thing any Mother and Child can go thur. My daughter has Vanishing White matter Disease (Childhood ataxia). When you face something like ...
- By bkabo · New reply November 25, 2008
- Journal · 17 replies
- Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...
- By Samsmom · Posted November 24, 2008
- Discussion in Zellweger spectrum · 0 replies
- I met some of you at the ULF Conference, and wanted to give you an update about our son, Sam. Sam was diagnosed with ALL - Acute Lymphoblastic Leukemia November 13th. We are home from the hospital after ...
- By Missymm4 · Posted November 24, 2008
- Journal · 0 replies
- I signed up for this website to find other families who live with or has a child with Vanishing White Matter Disease (CACH). I need all the information and support I can get at this time in my life. I ...
- By wenALD · New reply November 23, 2008
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 21 replies
- This would be nice if we could support one another and maybe give each other information that might help alleviate some problems. I have four grown children. My sons, 33 and 28 were diagnosed in 1986 ...
- By jolocny · New reply November 22, 2008
- Discussion in Living with a leukodystrophy · 10 replies
- I began to get a daily message from Neale Donald Walsh (:Conversations with God" author) and on this particular day I was having trouble getting a hold on my situation with ALD/AMN - it can be so different ...
- By BH · New reply November 21, 2008
- Discussion in Adrenomyeloneuropathy (AMN) · 4 replies
- Can anyone tell me where to purchase GTO oil? I had been getting it from Parrillo Performance in Ohio, but when I called last week (11/12/2008) they said they no longer carry the stuff ...
- By JAMIESBUSY · New reply November 20, 2008
- Journal · 6 replies
- My mother always told mt that "life is what happends to us while we are making other plans." boy now I know what she was saying. I never planned for my children to be faced with this disease, i never ...
- By snugglebearsmom · New reply November 19, 2008
- Journal · 10 replies
- Tyler's transplant has been sucessful so far, all of the cells have been engrafted. Now it's just a matter of time to see if his body accepts them and the missing enzyme is replaced. We are being very ...
- By KateNDalton · New reply November 13, 2008
- Discussion in Adrenomyeloneuropathy (AMN) · 15 replies
- My dad has AMN and has been in a wheelchair for a few years now. He steadily progressed to having to use the wheelchair. He started showing signs in his 20's and is now 64. He still has his stubborness ...
- By KateNDalton · New reply November 4, 2008
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 9 replies
- My 4 year old son was just diagnosed in January of this year. It feels like it was ages ago since we were in Maryland at Johns Hopkins and receive the LO and then to Riley Hospital in Indianapolis for ...
