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Wednesday, August 25, 2010

Cure Down Syndrome? (Part 1)

This essay was written by a mother with a young child with Down syndrome. She did such a terrific job I asked her if I could post it on my blog.  Enjoy!

Cure Down Syndrome?

By Christy Sanchez

According to Webster's Online Dictionary, the definition of cure is to remedy; to remove; to heal. We have always been told that there is no “cure” for Down syndrome. That is – we’ve been told there is no remedy for Down syndrome. But is that really true? Is that really the case in 2010? According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Fast forward to now - the current life expectancy averages 56 years. What caused this change in life expectancy?
Did Down syndrome change in 27 years? Did the trisomy of chromosome 21 change between 1983 and 2010? Of course not - the genetics are exactly the same now as they
were then. A baby born in 2010 with Down syndrome has the same trisomy of chromosome 21 as the baby born in 1983. So what caused the increase in life expectancy? The answer is quite simple – advances in medicine. Not one parent or professional will argue this point. It is evident in the result – longer life expectancy.
Longer life expectancy is now achieved by addressing the physical problems associated with Down syndrome one by one. By identifying the issues that are more common in children with Down syndrome and screening patients – appropriate treatments are prescribed. These common problems have a remedy or cure. For example, an underactive thyroid has a remedy – medication. Celiac disease has a remedy – follow a gluten-free diet. Heart problems such as ASD and VSD have surgical remedies to treat them. People with Down syndrome still have the same triplicated chromosome 21, but there are now remedies for the physical problems associated with the overall syndrome. What do we know about what's different in their brains? Is there a remedy that can help now?
In the last 10 years an accurate mouse model (of Down syndrome), Ts65Dn, has been
developed. According to the NIH National Human Genome Research Institute, the Ts65Dn mouse mimics trisomy 21 (or Down syndrome) and exhibits many of the behavioral, learning, and physiological defects associated with the Down syndrome in humans, including mental deficits, small size, obesity, hydrocephalus and thymic defects. This model represents the latest and best improvement of Down syndrome models to facilitate research into the human condition. In the lab, researchers are now able to reveal answers or remedies for the neurological disorders associated with Down syndrome. Too often when we talk about a remedy or cure for problems in the brains of people with Down syndrome, parents and professionals alike say, “No, a cure is impossible. People with Down syndrome are the way they are – just accept it and move on!” Before you jump to that same conclusion, I encourage you to take a look at current science. Read it yourself. That is exactly what Teresa Cody did. Teresa is the mother of Neal, who has Down syndrome. At the age of 8, Neal couldn't read, write or distinguish shapes. “The main problem was he really couldn't remember. He did not ask questions. He could not verbalize,” said Teresa. “He used to pick up the pen and stare at the paper and you could see he had no idea which way to make the pen go to copy something.” Teresa studied the research. Based on Dr. Craig Garner's work at Stanford, she devised a protocol that contained compounds shown in Garner's research to target the underlying cause of learning and memory problems. Just one year later, Neal was reading at a second grade level and doing multiplication by hand. Neal's academic gains while taking the treatment protocol inspired Teresa to create the Changing Minds Foundation, a 501(c)3 non-profit organization, dedicated to improving the mental ability of persons with Down syndrome – now – with available medical treatments and proper education. A documentary film called 'Changing A Mind' tracked the progress of Neal and several other pilot protocol participants over the course of two years. You can view a trailer of the documentary on their website

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