My son Joey was nearly dead when we began treating him with DHA. Joey began to loose his hearing and sight by the time he was 9 months old. He was diagnosed with neonatal adrenoleukodystrophy NALD at 18 months and by the time he was three years old he was deaf-blind, loosing weight and frequently hospitalized for hydration and difficult seizures. DocosaHexaenoic Acid saved his life. No one can change my mind about that. He was the first child in the United States to receive DHA treatment. We first heard about DHA in an article published in Neurology, Vol 43, Issue 7 1389-1397, by M Martinez, M Pineda, R Vidal, J Conill and B Martin at the Biomedical Research Unit, Maternity-Children's Hospital, Valle de Hebron, Barcelona, Spain. My wife Joanne contacted Hugo W. Moser, M.D., who is a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser is also University Professor of Neurology and Pediatrics at Johns Hopkins University.
Our timing was fantastic. Joey became the first child to be treated, in fact the treatment protocol was worked out during our first visit. Joey was 3 years old and was spending more time in the hospital than home. He had not gained any weight in over a year. About six weeks after starting to take DHA he began to gain weight and was not hospitalized again except during a period where DHA was not available for about 8 weeks. After it became available again he recovered his health. Today he is 18, he remains deaf and blind with weakness in his legs that keeps him mostly in his wheelchair or crawling on the floor. Joey can communicate using a small subset of the American Sign Language (ASL) and will respond to a few words spoken directly into his ears. Short of screwing hearing aids to his skull we have been unable to get him to wear hearing aids. Joey responds will sit up in his bed when the light is turned on so we believe he sees some light. He is very curious about his environment and feels things with his hands without being destructive. He is a happy smiling child, with a winning personality. Joey is loved and admired by many members of his community in Worcester, Massachusetts. Joey attends the Accelerated Learning Laboratory (ALL) School in Worcester, MA and lives at home with his parents and younger brother Matt.
This page is in it's early stages of development. I intend to make it a good spot to learn about DHA. I'm not a doctor. You should not count on any advice from me. You need the guidance of a good doctor. I can't guarantee that all the links will be good and the information correct. It is up to you to remain skeptical and look at information from many sources. What I will try to do is tell the story of how Joey became such a beautiful and valuable member of his community.
I'll start with just a list of links I think are important to understanding DHA.
- IMHO, If you just read one thing about DHA read this
- In Manuela Martinez's, M.D. own words
- Therapeutic effects of docosahexaenoic acid ethyl ester in patients with generalized peroxisomal disorders
- What the heck is a generalized peroxisomal disorder
- Descriptive information about DocosaHexaenoic Acid
- MRI evidence that docosahexaenoic acid ethyl ester improves myelinization in generalized peroxisomal disorders.
- Adrenoleukodystrophy & Lorenzo's Oil
- THE PBD PROJECT - PBD's means that a child's peroxisomal enzymes are not functioning as they should.
- DocosaHexaenoic Acid References
- Interesting alternative view
- Investigators Seeking Research Subject. Once you get to the page read way down or search for the word DHA
- Funding recieved from the Cystic Fibrosis Foundation to study infant formula supplemented with DHA in newborns diagnosed with CF.