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Becky Yoo's Research Report
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The Story Written Behind Down Syndrome
Report:

The Story Written Behind Down Syndrome

Becky Yoo
Period 1
April 22, 2011

Intro:

You're walking down the hallway of your school and all of a sudden to your left you see a student standing there awkwardly with a parent and a teacher. He's talking in a way you can't understand. His words just come into one ear and fly out the other. His eyes are crossed and his tongue is pushed out. The first thing we all think of when we see someone like this is a Special Ed student. Right? You stare and stare, thinking what happened to them. Majority would think that it was just their mom drinking, causing them to turn out this way, but no, there's actually more depth into it than a silly reason like that. Down syndrome (also known as Trisomy 21) is a congenital disease that is a birth defect. One common mistake that people mistaken Down syndrome and its cause has nothing to do with any environmental factors or activities people do. It's an extra chromosome that can change a person's life within seconds and soon, they'd be the one to stand out and the one you see walking down the hallways of your school.


Trisomy 21

Findings:

Has anybody ever told you to live your life to the fullest? It’s extremely hard when you find out that you have a genetic disorder. Want to hear something worse than that? There is no cure to this kind of disease whatsoever since it is inherited by a parent (the mother or father. Want to know something EVEN worse? It is a life long disease with continuous symptoms and conditions that include hearing loss, depression, ADHD, ADD, autism spectrum disorders, seizures, visual impairment, eye conditions, dementia, cervical spine instability, frequent ear infections, obesity, blood diseases, and most importantly the most harmful symptom, the acute lymphoblastic leukemia disease. Yeah, no one deserves to be living a long 50+ year life with physical and mental disabilities that prevents them from being able to do as much as anyone else can do. 'The best of the cures for Down syndrome is to treat such children with care and concern.' (Oak, 4).They yearn in having gentle love and protection around them. Parental support and educational aid can help kids learn to live a regular life even with Down syndrome in the way. 'Children with Down syndrome can often benefit from speech therapy, occupational therapy, and exercises for gross and fine motor skills.' (Shriver, 1). 

Any child with Down syndrome can attend a regular school like anyone else, but would be transferred into a special educational program, 'but such programs can facilitate a relatively normal development of these skills.' (Oak, 3).Outside their school life, continuous symptoms that come and go can be helped by visiting a counselor and going to a local hospital for checkups couple times a year. There will always be some sort of medical backup plan/help for majority of the symptoms that need to undergo surgery like blood diseases that would need a bone marrow transplantation to help cure this symptom as well as doctors can. 'Not only children suffering from the disorder, but many time parents of such children also need support and counseling to cope with the emotional and practical aspects of the disorder.' (DiMauro, 1). Making appointments to see a professional therapist is also recommended because parents can help open there heart up to their child that is affected with Down syndrome. Couple signs and features of children with down syndrome can differ, but majority of them all have a '...small abnormally shaped head, flat face, flat nasal bridge, tiny nose, eyes slanting upwards and outwards, protruding tongue, thick short neck, fine sparse hair, poor muscle tone, broad short hands, a large gap between the first and second toe and a single crease in the hand.' (Johnson, 3).

When a child with Down syndrome is first born, a doctor can automatically figure out that he/she has inherited this genetic disorder Couple of the other ways the doctor can analyze this, is to give a child a blood test that confirms or denies the process on which if he/she is affected with Down syndrome. If the results are positive, then years of consoling and repeatedly visits to the hospital are near for parents. Thankfully, 'due to the administration of the available medicines, a person with Down syndrome can live up to an age of 50 years or more.' (Oak, 2). Which means any child who is affected with Downsyndrome can live a long, full life like anybody else.

 

Many people know what Down syndrome is, but majority of the people don't give enough credit to the two men that have discovered the cause, name, and effects of this disease. John Langdon Haydon Down (an English Physician on the left) and Professor Jerome Lejeune (a Geneticist from Paris) both discovered the history behind Down syndrome decades later. 'Down Syndrome is a common birth defect and has been existing since centuries, though it was identified only in 1866...' (Johnson, 1). Before Professor Jerome's time, John Down and his wife decided to commit their lives into helping patients with any sort of sickness or disease that crossed by in their town. 'They opened an asylum called 'Normansfield' and employed teachers, occupational therapists (who taught craft), physical therapists (who conducted sports activities)...' (Johnson, 3). During their process of this, they ended up seeing patients with similar physical and mental problems that became a long line of questions, curiosity and confusion. People started to wander what the cause of this odd bias-like disease was. All children that were born with this syndrome usually had a hard time talking, walking in a straight line, looking straight and not having the regular ability to keep up with a normal conversation with someone. John Down indentified and encountered these odd physical appearances, but about a couple months later, 'he wrote an essay and referred to them as 'Mongoloids.' People from Mongolia were offended and hence this disorder was named after John Down himself.' (Johnson, 2).Then about 92 years later in the year of 1959, Professor Jerome Lejeune discovered the cause of the John Down Syndrome.

Due to one extra chromosome it can react in such ways to make one person have disabilities everywhere in their body. 'Mosaicism (about 1-2%) happens when only some of the cells have the extra 3rd copy. Translocation (about 2-3%) happens when the long arm of chromosome 21 is attached to another chromosome.” (Michelle, 1). Professor Jerome realized that each person should have a total of 46 chromosomes (23 pairs) that are inherited from the parent (the mom or the dad.) Instead, children that are affected with Down syndrome have their 21st chromosome with three copies and not two, which produces a child with the lack of mental and physical disabilities. Nowadays, the 'Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today.' (Michelle, 2). Since then, Researches are now trying to find any new possible cut technology that can help prevent this syndrome. Somehow, the results end up coming negative or useless as of now.  While researchers and scientists find ways to treat Down syndrome for good, children with this disorder '...are at a risk of heart diseases and frequently suffer from other infections.' (Oak, 1). This means that children that are affected with this genetic disorder and are suffering from one symptom, there can be other symptoms that can come in and make matters worse in a child's body. As of right now in this generation, there is NO possible cure to reverse or fix Down syndrome since it is a genetic disorder (something you inherit from either one of a parents.) The only cure that is available today is a surgical way for symptoms related to this disease with a continuous line of check ups to the therapist and doctor. 'They [Scientists/Researchers] hope to find remedies for Down syndrome. We can look forward to even better cures for Down syndrome in [the] near future.' (Oak, 5). Researchers say that once they find a cure for this disorder, it'll be a big risk of the idea. Scientists are also teaming up to having a safe yet effective medication or surgical way in reversing or curing Down syndrome for good.

If I were to have a survey about the total amount of people who were affected by Down syndrome in this country alone, it would come to about 4.5 to 5.8 million Americans. Except one out of 800 births are affected every year in the United States ALONE. Which means imagine the amount of people that are born with Down syndrome in Japan, China, Mexico, Canada, Korea, Australia, Europe, Brazil, Russia, Africa, and along with the other countries in this world. Once you add up the total amount of Americans that are affected with this disorder, along with the millions of people worldwide, the total amount can go up high as triple the amount of millions, even billions. That is why there are always pros and cons of Down syndrome. People that are affected by this disorder are actually twice as stronger than anyone else because of the amount of mental stress and all the times a person would undergo surgery their whole life due to all the symptoms. Some ask why or how the cause of Down syndrome is possible, but when a mother is the carrier of that extra copy of chromosome that causes her child to be born with Down syndrome is actually depended on how old the mother is. The more her age increases, the more likely it is to be having a son/daughter with special disabilities. 'Mother's age at conception Risk of Down syndrome: 25 years 1 in 1,250, 30 years 1 in 1,000, 35 years 1 in 400, 40 years 1 in 100, 45 years 1 in 30' (Heyn, 1). 

Researchers state that down syndrome is not caused by pre-mothers drinking or having to do with any environmental factors. They say that the only possible way to have a child with Down syndrome is by an extra chromosome that gives their child a birth defect. Once a parent has conceived a child with Down syndrome and is planning to have another child later in the near future, there's a 99% chance to have another child with the same disorder. In this case, 'Parents who have conceived a child with Down syndrome have a 1% increased risk of conceiving another child with Down syndrome. If a parent is a carrier of a chromosome 21 translocation, the risk can be as high as 100%' (Heyn, 2). It's not that the older your age increases, you most likely shouldn't have a child, it's just because no parent in this world would want their own child being the one to be made fun of at school and not having a child that has difficulties doing simple tasks.  On the other hand, 'Many with Down syndrome pass out successfully from high school and college, and have full time jobs.' (Mathias, 1). Myriad of parents or guardians want their child to live life to the fullest, one major inspiration that keep many parents motivated is a man like 'Chris Burke who played the role of Charles 'Corky' Thacher for 4 years in the hit TV series 'Life Goes On' is a living example that a person with Down syndrome can lead an almost normal life.' (Mathias, 2). You might be thinking that's it? There's only one famous man that was born with Down syndrome? WRONG! 'Jane Cameron - 1949-2000 (artist whose tapestries hang around the world), Sujeet Desai (musician, married and well settled), and Michael Jurogue Johnson (artist), all suffer/suffered from the Down syndrome.' (Mathias, 3). Parents have nothing to worry about when they are dealing with a child with this syndrome. Anything's possible, even becoming the wealthiest, talented man/woman in the U.S. All children need is the courage and motivation to believe that they are invincible, even if Down syndrome can be holding them back.

Conclusion:

Overall, the life of children with Down syndrome can be the most whole-heartedly people you will ever meet. With their disabilities or even without, they are the most special and unique people that will ever come into your life, they can practically blow your mind! One extra chromosome won't stop them from living their life to the fullest, just like Chris Burke, Sujeet Desai, Michael Jurogue Johnson, Jane Cameron and hundreds more. These people were once children that were born with the same disorder as thousands of others were born with, but one thing that makes Chris Burke and others stand out is because they dreamt big and they made it possible for those who didn't believe they could. Don't be the one to stand and watch those children that are walking down your school with this.

Bibliography:
Appendix:

Greentorch photoluminescent exit signs help the environment by using no electricity, no batteries, and last longer than other self-luminous exit signs. Gambassa's "Energy efficiency and exit signs" project curriculum teaches students how to generate income by using available utility retrofit rebate programs to replace incandescent exit signs. Earn while you learn.