New journals
- By Missymm4 · Posted November 24, 2008
- 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 snugglebearsmom · Posted November 6, 2008
- 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 cintarire · Posted November 4, 2008
- 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 KateNDalton · Posted October 27, 2008
- 1 reply
- http://daltonscookbook.110mb.com ...
- By marshallsaunt · Posted October 2, 2008
- 5 replies
- Marshall is my 6 yr old nephew. He was diagnosed with X-linked Adrenaleukodystrophy after an MRI for headaches. We were all devastated at the news and my sister and I started researching the internet ...
- By snugglebearsmom · Posted September 29, 2008
- 5 replies
- It's been a little bit since I've posted a journal entry, things have been really emotional around here. On Saturday September 27, 2008 Tyler and his Grandma traveled back to Duke University. We decided ...
- By 2001mom · Posted September 19, 2008
- 1 reply
- My daughter Hailey ,7, was diagnosed a year ago. It took 5 years to get a diagnosis. She appeared to develope normally until 9 months when she stopped eating and started having seizures. She was unable ...
- By cubsportgal21 · Posted September 12, 2008
- 11 replies
- Graduating from high school in 2006. I came to face a disease i knew nothing about. It brought me to my knees, and doctors had no clue to what was going on with me. Until my mom stood her grounds and ...
- By coco1252 · Posted September 8, 2008
- 2 replies
- I also have a son who was diagnosed with ALD and adrenal insufficiency when he was 8. He was on Lorenzo's oil until he was 16. He wanted to go off it. It was a hard decision but he saw everything his ...
- By snugglebearsmom · Posted August 25, 2008
- 17 replies
- Today was a very emotional day, we decided that we are not going to have him go through the transplant. It was the hardest decision I have ever had to make in my life however I feel that it was for the ...
- By annilar · Posted August 15, 2008
- 0 replies
- We are a family with a 36 year old "gal" who suffered with schizoaffective disorder for some 20 years ( undiagnosed) . The hope I want to share is the latest meds and therapies in this field have helped ...
- By anedelk · Posted August 14, 2008
- 3 replies
- WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who ...
- By JOSHYSMOM · Posted August 2, 2008
- 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 BMA · Posted July 25, 2008
- 0 replies
- I am almost 50 (this year) and have a son, 26 years old. He was diagnosed with ALD at age 22 during his 4th year of college. He had a a bone marrow transplant October of 2004 at the University of Minn ...
- By wordnerd58 · Posted July 25, 2008
- 4 replies
- I try to take it one day at a time these days. As things ge harder for me to keep up with I just try to do what I can that day and let the rest go. For anyone who ever knew before that is the exact opposite ...
- By here4Matt · Posted July 22, 2008
- 1 reply
- My mother just sent me this link about Team Hoyt, a father who does for his son all the physical things the son cannot on his own, due to CP. I've learned that so many leukodystrophies are often misdiagnosed ...
- By Summer630 · Posted July 12, 2008
- 0 replies
- Has anyone heard of Hereditary diffuse leukoencephalopathy with spheriods ?( HDLS) I have a family member that has been diagnosed with this disease. She is 39 years old. Just looking for anyone that might ...
- By bkabo · Posted July 7, 2008
- 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 Walter · Posted June 20, 2008
- 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 Tasha · Posted June 12, 2008
- 4 replies
- Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...
