RE: My intro-Don

[Guest guest]

Thanks for the welcome Don. :-)

I have learned to be at peace with my decisions regarding her health care. I often stand in awe of how God protects us even when we are all totally ignorant of the real problems.

For the record, there is nothing special about me at all. I have come to see that people like ( that includes ALL disabilities and special needs) are given to us to be our teachers and to IMPROVE our life. I see her as a hero for having sacrificed what we consider to be a 'normal' life in order to enhance our own life. She has MADE me 'special'. I owe her a great debt for that.

Card wrote a song along those lines about his nephew with DS:

Window is a Mirror- from the "Come to the Cradle" CD

Card

Albert is a friend I knowWho walks a shuffling wayAnd you must learn to read his faceFor he hasn't much to sayBut he carries around inside himselfA knowledge he gives freeIf you look through, not at his lifeA whole new world inside you'll seeCHORUSWhen a window is a mirrorYou see two ways at one timeYou look outside and see the landThe mountains left to climbBut also you can see insideYour face suspended thereBehold your face and see your placeAnd understand why you are hereEach time I gaze upon this boyThere's something moves insideI see my own deformitiesNo longer need to hideAnd through his life I look uponMy life a different wayThis freedom that he gives for freeMeans so much more than I can sayChorusAnd Albert offers, at no charge,The hope one life can bringBut what he freely gives us allHas cost him nearly everything

There are cures being tossed about for Down Syndrome already! has been high doses of anti-oxidants since she was 8 weeks old in an effort to spare her brain cells. Now Stanford says they are making real progress to help their brains!!! The most recent article is below. I would like to point out that stem cells that are actually yielding results are ADULT stem cells. So far fetal stem cells have just caused problems. I don't understand the political uproar and the emphasis on the fetal stem cells at all. They are have been nothing but trouble, where as the adult stem cell research is providing CURES, yet no one brings that little fact up.

On a philosophical note: we actually DEBATE about whether or not we WANT to cure our kids!!! :-) Now don't me get wrong.. anything to rid them of the physical suffering is a no brainier. Many people with DS lead very healthy lives and rarely see a Dr. But when it comes to possibly changing our kid's personalities and their cognitive function... well... hhmmm.. that can be a pretty deep question once you start digging into it. I think most of us would do it FOR THE KIDS, but for us???? We all have come to see the beauty of them as they are and also the important part they play in life's grand theme, the lessons only they can teach, the affect on other's etc.. and all of us do feel that it will be a great loss to the world at large. but again.. for the individual person, it would not be right to ask them to remain retarded when that could be cured. It 's just not as cut and dried as one might think.

And what would you do if the person said they didn't want to change? Force it on them for their own good.... a lot of ethical questions are going to come up with a cure.

http://www.altonweb.com/cs/downsyndrome/aug04.html

—Eileen Conklin

Down 'cure' might be within reach by Carey Goldberg, Globe Staff, E-mail: Goldberg@.... January. 27, 2004. © Copyright 2004 Globe Newspaper Company. Reprinted Courtesy of The Boston Globe granted by Jane Wilkinson, Managing Editor/Administration.

A decade ago, any researcher who dared to suggest that Down syndrome could one day be "cured" was heading straight for the scientific fringe.Mainstream consensus went: Down syndrome, the leading genetic cause of mental retardation, was too complex a problem even to approach.Now, although that goal remains beyond the horizon, a growing number of reputable researchers at universities such as Stanford and Columbia say they can foresee a time when they'll be able to break the link between Down syndrome and retardation. Armed with an array of new tools-from genome mapping and stem cells to genetically engineered mice and a deepening understanding of Alzheimer's disease - they are trying to pinpoint just how the extra chromosome of Down syndrome leads to retardation and a host of other problems.Once they figure that out, the thinking goes, perhaps they can someday help people with Down Syndrome gain some IQ points, or even develop normal intelligence. There is a precedent: Certain rare genetic metabolic diseases once meant certain retardation. Now, those babies can grow up mentally normal, thanks to diagnosis as newborns, pills and diet restrictions."The whole research scene has changed dramatically" since the extra chromosome, Chromosome 21, was mapped in 2000, said Suzanne Armstrong, spokeswoman for the National Down Syndrome Society."We realize that any potential treatments resulting from research at the genetic level are years away," she said, "but we're very hopeful." More than 350,000 Americans have Down syndrome and the moderate or mild retardation that generally goes along with it. They are at higher risk for heart defects, childhood leukemia and other physical problems, too. They also tend to have a distinctive look - short stature, small nose, a relatively flat face. The life expectancy for people with Down syndrome has doubled in the last two decades or so, from 25 to 49 years; and the sweeping movement to raise children at home instead of in institutions has greatly improved the quality of those longer lives, parents and advocates say.Sheila Cannon, coordinator for the Down syndrome center at Children's Hospital in Pittsburgh, said the progress on health and quality-of-life issues since her daughter, Kerry, was born 17 years ago has already been stunning: Back then, she was told, "Down Syndrome is what it is."Now, it seems, that may not always be true. Prevention of mental retardation "may not happen within the next few years, and it may not even be helpful to my daughter, but it probably would be helpful to the generations that follow," she said. "That's how I look at it."Getting there, advocates and researchers say, will require much more of a financial commitment from the federal government.In recent years, federal funding for Down syndrome research has averaged about $10 million a year; the National Down Syndrome Society is now pushing for twice that sum. By comparison, Alzheimer's disease, which affects more than 4 million people, got $600 million from the National Institutes of Health alone in 2002.But some of that river of Alzheimer's money is trickling over to Down syndrome research because of an intriguing connection: The brains of virtually all middle-aged people with Down syndrome show telltale signs of Alzheimer's disease, and one of the genes on Chromosome 21 is linked to production of beta-amyloid, a protein that accumulates in abnormal form in Alzheimer's brains. The beta-amyloid connection raises an exciting prospect, said Dr. Shelanski, codirector of the Taub Institute for Research on Alzheimer's disease at Columbia University: It could be, he said, that a child with Down syndrome becomes retarded simply because "the child is developing with a flood of beta-amyloid, so they don't learn very well, they don't make synapses very well.""We're beginning to study this in the mouse," he said, and eventually, perhaps, drugs that will be developed to sop up extra beta-amyloid in the brains of Alzheimer's patients could also be used to reduce retardation in children. Human research is beginning as well. In a 2002 article in the journal The Lancet, researchers took two sets of post-mortem fetuses, one with Down syndrome and one without, and compared the gene activity of their neural stem cells. They found that certain genes that help brain cells develop and communicate were disrupted only in the Down syndrome fetuses. A Lancet commentary noted that those genes could turn out to be targets for drug and gene therapy in humans. But that will take years to determine. In the meantime, a few clinical trials have begun to test existing drugs to enhance brain function in people with Down syndrome, largely on the premise that whatever shows promise improving learning and memory with Alzheimer's disease might work in Down syndrome as well. Pfizer, which makes an Alzheimer's drug called Aricept, is testing it in dozens of people with Down syndrome around the country, checking for any noticeable improvement in memory, attention, language and more.Results of previous studies of Aricept have tended to be modest, however, said Dr. Ira Lott, director of pediatric neurology at the University of California at Irvine. "The problem with that whole class of medication is that it's temporary," he said. "It's like hipping a tired horse - the horse runs faster and then poops out." He and colleagues are now working on a study using high-potency antioxidants - such as vitamins E and C - for people with Down syndrome. Already, the vitamins have shown some promise in improving learning and memory in Alzheimer's patients, he said.Researchers tend to have an easier time imagining an antiretardation treatment that begins at birth - or even before - than one given in adulthood. But an adult treatment is not impossible, said Dr. C. Mobley, director of a new center for research on Down syndrome at Stanford University. The effects of the extra chromosome "may or may not be reversible," he said. "We just don't know." Years ago, a scientist stating that the retardation of Down syndrome could be prevented was "a voice in the wilderness," said Dr. Leonard E. Maroun, a professor emeritus of microbiology and immunology at the Southern Illinois University School of Medicine.That is changing a bit, said Maroun, who has worked for years on the role that interferon, a virus-fighting protein used to treat some cancers, may play in Down syndrome. He has patented the idea of anti-interferon therapy and is developing an anti-interferon drug that he plans to sell through his Beverly-based start-up, Meiogen Biotechnology."The general public's image of Down syndrome is one of hopelessness," Maroun said. But, "I'm virtually certain we've got something that will really help. Maybe I'm wrong, but certainly there are ideas out there that make it plausible that we could help these kids, and could encourage scientists to get into this area."

Carol in IL doihavtasay@...Mom to 7 blessings including , 3 with DS and Grandma to Micah and Jonah.

" My problem isn't how I look, is how you see me." "Unless the Lord builds the house, they labor in vain." Psalm 127

===============================Hi Carol,Welcome to the group. Wow!!! I do believe that you have been blessed in many ways. It takes very special people to have very special people in their lives to take care of. While we all have our own opinions about various modalities of healthcare let me state to you that there is no wrong choices ever. Any and every choice a person makes is the right choice for them for the moment. This I firmly believe. Some of the choices we make in our lives are very positive and good and some not quite so positive and good but this is how we learn to make better choices. :-)There is very little in the way of alternative or conventional therapies that will help to bring about total healing in a Down's Syndrome child. Personally, I believe that it is possible but don't have a clue how to go about it yet. It will take time but I believe that the truth of this affliction will be made known and along with that will come the cure and total healing of those so afflicted.Good job on your voodoo magic. Also on your willingness to learn all you can from both camps for they both have much to offer in many areas. I have no doubt as to your recently acquired education. It is good that you are still willing to learn and grow. I do believe that Suzi gave you some good ideas so I won't remention them.Peace be with you Carol and with your family as well.-- Peace, love and light,Don Quai"Spirit sleeps in the mineral, breathes in the vegetable, dreams in the animal and wakes in man."

[Guest guest]

I agree Janet,

Their disease is not who they truly are. :-) She is not a 'down syndrome girl' She is a girl who has Down Syndrome. Though it has a profound affect on her, *she* is not down's, she is and if she were to be cured, that would of course not change. One's soul is disease free.

Carol in IL doihavtasay@...Mom to 7 blessings including , 3 with DS and Grandma to Micah and Jonah.

" My problem isn't how I look, is how you see me." "Unless the Lord builds the house, they labor in vain." Psalm 127

Me and my husband feel the same way about our autistic boys. We only want them to be happy and healthy. We enjoy them and our little girl so much it is hard to think of such a major change. But if a cure were possible I would give it to them and know that their spirits would come through it shining brightly, and they would continue to be a blessing to everyone around them.

Janet

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