Active journals
- By Walter · New reply yesterday at 10:27 am
- 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
- 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 cintarire · New reply November 26, 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 bkabo · New reply November 25, 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 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 JAMIESBUSY · New reply November 20, 2008
- 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
- 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 October 29, 2008
- 1 reply
- http://daltonscookbook.110mb.com ...
- By msdmom · New reply October 28, 2008
- 3 replies
- My daughter, almost 32 years old, was diagnosed with Multiple Sulfatase Deficiency at age 7 1/2. She is blind, profoundly mentally retarded, must use a wheelchair, and needs gastric tube feedings. Despite ...
- By marshallsaunt · New reply October 9, 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 wordnerd58 · New reply October 7, 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 cubsportgal21 · New reply October 7, 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 snugglebearsmom · New reply October 2, 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 snugglebearsmom · New reply September 29, 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 coco1252 · New reply September 26, 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 2001mom · New reply September 20, 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 asnyder · New reply September 13, 2008
- 7 replies
- Most women become mothers by accident, by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become a mother of a handicapped child. Did you ever wonder how ...
- By anedelk · New reply August 16, 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 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 here4Matt · New reply August 14, 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 ...
