A blessing in disguise

Being unique and different is a part of what makes every one of us special. Being different is good. But not always. Imagine being born as an ordinary human yet with a different appearance than usual. You see the world as it is, but the world perceives you to be different. This is the exceptional experience that a person diagnosed with Down Syndrome relive every single day of their lives.

Down syndrome is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome. The date for World Down Syndrome Day is the 21st day of the 3rd month, which was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. December 2011 the United Nations General Assembly declared 21st March, as the World Down Syndrome Day. This day helps people all over the world to show their love, care, and respect for people having down syndrome.

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Down syndrome varies in severity among individuals, causing lifelong intellectual disability and developmental delays. It’s the most common genetic chromosomal disorder and cause of learning disabilities in children. It also commonly causes other medical abnormalities, including heart and gastrointestinal disorders. A cure for Down syndrome is still at the experimental level. Early treatment programs can help improve skills. They may include speech, physical, occupational, and/or educational therapy. With support and treatment, many people with Down syndrome live happy, productive lives. A better understanding of Down syndrome and early interventions can greatly increase the quality of life for children and adults with this disorder and help them live fulfilling lives.

Children and adults with Down syndrome have distinct facial features which give them an abnormal appearance. Though not all people with Down syndrome have the same features, some of the more common features include a flattened face, small head, short neck, protruding tongue, upward slanting eyelids, unusually shaped or small ear, poor muscle tone, broad, short hands, relatively short fingers and small hands and feet, excessive flexibility, and short height. While it’s nice to think that people with Down syndrome are consistently happy and loving, like most people, they experience a full range of emotions. Yes, every person with Down syndrome has some degree of intellectual disability, but their personalities are as individual as any person in the wider community. People with Down syndrome can feel angry, sad, embarrassed, or excited. Rather than always being happy, people with Down syndrome are at higher risk of mental health conditions such as depression, anxiety, and obsessive-compulsive behavior than the general population.

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Many years ago, if a child was born with Down syndrome, they weren’t expected to live very long or go to a normal school. They weren’t expected to have a career or get married. Thanks to advances in medicine and social attitudes, as well as improved community These days, their life expectancy is 60 years. There are many misconceptions about people with Down syndrome due to two major contributing factors: the syndrome itself has changed so fundamentally (for the better) with the dismantling of the inhumane institutions where people with Down syndrome were previously forced to live, and due to the lack of medical and basic scientific research makes it difficult to get accurate, updated information about people with Down syndrome. A child with Down Syndrome negatively impacts their siblings, People with Down syndrome cannot walk or play sports, cannot read, or write, they don’t feel pain and always feel happy are some common misconceptions.

On this day dedicated to these special humans, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice advocating for the rights, inclusion, and wellbeing of people with Down syndrome. As Rotaractors it is with great pride, we would like to mention the project යාலுva, a project which has been carried out over the past 08 years, as an inspiration for kids with Down Syndrome and to create a colorful world for them. Many programs have been conducted continuously in line with the project to enhance the lives of children diagnosed with Down syndrome in Sri Lanka.

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This year also Rotaract District 3220 – Sri Lanka and the Maldives, celebrates World Down Syndrome day with යාலுva, intending to empower children sustainably living with Down Syndrome, along with their parents, teachers, and caregivers.

To know more and to join us celebrate the birth of heaven’s most special children: children with hidden, and magical abilities :

https://www.facebook.com/RotaractWDSD/

Maya Angelou has said that “If you are always trying to be normal, you will never know how amazing you can be”. Time has come to put a little effort to make them feel how amazing they are. Let’s take their hands not their lives, for we are more alike than different. Let’s make this world a better place for the loving souls with Down syndrome.

Remember Friends don’t count chromosomes!

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අද්විතීයවීම හා වෙනස් වීම අප සෑම කෙනෙකුටම ආවේණික වන දෙයකි. වෙනස් වීම හොඳයි. නමුත් සෑම විටම නොවේ. අන්‍යන්ට වඩා වෙනස් පෙනුමක් ඇති සාමාන්‍ය මිනිසෙකු ලෙස උපත ලැබීම ගැන සිතා බලන්න. ඔබ ලෝකය සාමාන්‍ය ආකාරයටම දුටුවත්, ලෝකය ඔබව වෙනස් ලෙස සලකයි. ඩවුන් සින්ඩ්‍රෝම් රෝගයෙන් පෙළෙන පුද්ගලයෙකු ඔවුන්ගේ ජීවිතයේ සෑම දිනකම නැවත නැවත අත්විදින අත්දැකීම මෙයයි.ඩවුන් සින්ඩ්‍රෝමය යනු අසාමාන්‍ය සෛල බෙදීමක් හේතුවෙන් වර්ණදේහ 21 හි පූර්ණ හෝ අර්ධ වශයෙන් පිටපතක් ලැබෙන විට ඇතිවන ජානමය ආබාධයකි. මෙම අතිරේක ජානමය ද්‍රව්‍යය ඩවුන් සින්ඩ්‍රෝම් හි වර්ධන වෙනස්කම් හා භෞතික ලක්ෂණ ඇති කරයි. ලෝක ඩවුන් සින්ඩ්‍රෝම් දිනය 3 වන මාසයේ 21 වන දිනය වන අතර එය ඩවුන් සින්ඩ්‍රෝමය ඇති කරන 21 වන වර්ණදේහයේ ත්‍රිත්වයේ (ට්‍රයිසෝමි) සුවිශේෂත්වය දැක්වීමට තෝරාගෙන ඇත.2011 දෙසැම්බරයේ එක්සත් ජාතීන්ගේ මහා මණ්ඩලය මාර්තු 21 ලෝක ඩවුන් සින්ඩ්‍රෝම් දිනය ලෙස ප්‍රකාශයට පත් කළේය. සින්ඩ්‍රෝමය වැළඳී ඇති පුද්ගලයින්ට ඔවුන්ගේ ආදරය, සැලකිල්ල සහ ගෞරවය පෙන්වීමට මෙම දිනය ලොව පුරා සිටින මිනිසුන්ට උපකාර කරයි.

ඩවුන් සින්ඩ්‍රෝමය පුද්ගලයන් අනුව වෙනස් වන අතර එය ජීවිත කාලය පුරාම බුද්ධිමය ආබාධ සහ සංවර්ධන ප්‍රමාදයන් ඇති කරයි. එය ළමුන් තුළ ඉගෙනීමේ දුර්වලතා සඳහා වඩාත් පොදු ජානමය වර්ණදේහ ආබාධයකි.ඩවුන් සින්ඩ්‍රෝමය සඳහා ප්‍රතිකාරයක් තවමත් පර්යේෂණාත්මක මට්ටමේ පවතී. මුල් කාලීන ප්‍රතිකාර වැඩසටහන් මගින් කුසලතා වැඩි දියුණු කළ හැකිය. ඒවාට කථන, ශාරීරික, වෘත්තීය සහ / හෝ අධ්‍යාපන ප්‍රතිකාර ඇතුළත් විය හැකිය. ඩවුන් සින්ඩ්‍රෝමය ඇති බොහෝ අය සතුටින් ඵලදායී ජීවිත ගත කරති. ඩවුන් සින්ඩ්‍රෝමය පිළිබඳ වඩා හොඳ අවබෝධයක් සහ මුල් මැදිහත්වීම් මඟින් මෙම ආබාධය ඇති ළමුන් සහ වැඩිහිටියන්ගේ ජීවන තත්ත්වය බෙහෙවින් ඉහළ නැංවිය හැකි අතර ඔවුන්ට තෘප්තිමත් ජීවිත ගත කිරීමට උපකාර කල හැකිය.

10123_down-syndrom-facts-v2

මෙම විශේෂ මිනිසුන් වෙනුවෙන් කැප වූ මෙම දිනයේදී, ඩවුන් සින්ඩ්‍රෝම් සහිත පුද්ගලයින් සහ ලොව පුරා ජීවත්වන සහ ඔවුන් සමඟ වැඩ කරන අය මහජනතාව දැනුවත් කිරීම සහ අයිතිවාසිකම්, ඇතුළත් කිරීම් සහ යහපැවැත්ම වෙනුවෙන් පෙනී සිටින තනි ගෝලීය හඩක් නිර්මාණය කිරීම සඳහා ක්‍රියාකාරකම් හා සිදුවීම් සංවිධානය කරති. රොටරැක්ටර්වරුන් වශයෙන් මහත් ආඩම්බරයකින් යුතුව, පසුගිය වසර 08 ක කාලය තුළ ක්‍රියාත්මක කරන ලද ව්‍යාපෘතියක් වන යාலுva ගැන සඳහන් කිරීමට කැමැත්තෙමු.ශ්‍රී ලංකාවේ ඩවුන් සින්ඩ්‍රෝම් රෝගයෙන් පෙළෙන දරුවන්ගේ ජීවිත වැඩිදියුණු කිරීමේ අරමුණෙන් යාலுva ව්‍යාපෘතියට අනුකූලව බොහෝ වැඩසටහන් අඛණ්ඩව පවත්වා ඇත.මේ වසරේදී රොටරැක්ට් දිස්ත්‍රික් 3220 – ශ්‍රී ලංකාව සහ මාලදිවයින, ඩවුන් සින්ඩ්‍රෝම් සමඟ තිරසාරව ජීවත්වන දරුවන් සහ ඔවුන්ගේ දෙමාපියන්, ගුරුවරුන් සහ රැකබලා ගන්නන් සමඟ ලෝක ඩවුන් සින්ඩ්‍රෝම් දිනය සමරනු ලබයි.

මායා ඇන්ජලෝ වරක් පවසා ඇති පරිදි “ඔබ සැමවිටම සාමාන්‍ය තත්වයට පත්වීමට උත්සාහ කරන්නේ නම්, ඔබට කෙතරම් විස්මයජනක විය හැකිදැයි ඔබ කිසි විටෙකත් නොදනී”. ඔවුන් කෙතරම් විස්මයජනකද යන්න ඔවුන්ට දැනෙන්නට සුළු උත්සාහයක් දැරීමට කාලය පැමිණ තිබේ. අපි ඔවුන්ගේ ජීවිත ඔවුන්ගෙන් උදුරා නොගෙන ඔවුනට අත්වැලක් වෙමු. මන්ද අපි අසමානතාවලට වඩා සමානතා බෙදාහදා ගමු. ඩවුන් සින්ඩ්‍රෝමය සහිත ආදරණීය ජීවිත සඳහා මෙම ලෝකය වඩා හොඳ ස්ථානයක් බවට පත් කරමු.

Vector Illustration of World Down Syndrome Day.

தனித்துவமாகவும் வித்தியாசமாகவும் இருப்பது நம் ஒவ்வொருவரையும் சிறப்புறச் செய்யும் ஒரு பகுதியாகும். வித்தியாசமாக இருப்பது நல்லது. ஆனால் எப்போதும் இல்லை. வழக்கத்தை விட வித்தியாசமான தோற்றத்துடன் ஒரு சாதாரண மனிதனாக பிறப்பதை கற்பனை செய்து பாருங்கள். உலகைப் போலவே நீங்கள் பார்க்கிறீர்கள், ஆனால் உலகம் உங்களை வித்தியாசமாக உணர்கிறது. Down Syndrome நோயால் கண்டறியப்பட்ட ஒருவர் தங்கள் வாழ்க்கையின் ஒவ்வொரு நாளும் உயிர்ப்பிக்கும் விதிவிலக்கான அனுபவம் இது. Down syndrome என்பது அசாதாரண உயிரணுப் பிரிவு குரோமோசோமின் கூடுதல் முழு அல்லது பகுதி நகலை விளைவிக்கும் போது ஏற்படும் ஒரு மரபணு கோளாறு ஆகும். இந்த கூடுதல் மரபணு பொருள் down syndrome யின் வளர்ச்சி மாற்றங்களையும் உடல் அம்சங்களையும் ஏற்படுத்துகிறது. உலக Down Syndrome தினம் பங்குனி மாதத்தின் 21 வது நாளாகும், இது down syndrome க்கு காரணமான 21 வது குரோமோசோமின் ட்ரிசோமியைக் குறிக்க தேர்ந்தெடுக்கப்பட்டது. டிசம்பர் 2011 ஐக்கிய நாடுகள் சபையின் பொதுச் சபை மார்ச் 21 ஐ உலக டவுன் நோய்க்குறி தினமாக அறிவித்தது. இந்த நாள் உலகெங்கிலும் உள்ள மக்களுக்கு நோய்க்குறி இருப்பவர்களுக்கு தங்கள் அன்பு, கவனிப்பு மற்றும் மரியாதை ஆகியவற்றைக் காட்ட உதவுகிறது.

down syndrome 8

Down syndrome தனிநபர்களிடையே  மாறுபடுகிறது, இதனால் வாழ்நாள் முழுவதும் அறிவுசார் இயலாமை மற்றும் வளர்ச்சி தாமதங்கள் ஏற்படுகின்றன. இது பொதுவாக இதயம் மற்றும் இரைப்பை குடல் கோளாறுகள் உள்ளிட்ட பிற மருத்துவ அசாதாரணங்களையும் ஏற்படுத்துகிறது. Down syndrome க்கான சிகிச்சை இன்னும் சோதனை மட்டத்திலேயே உள்ளது. ஆரம்பகால சிகிச்சை திட்டங்கள் அவர்களின் திறன்களை மேம்படுத்த உதவும். அவற்றில் பேச்சு, உடல், தொழில் மற்றும் கல்வி சிகிச்சை ஆகியவை இருக்கலாம். ஆதரவு மற்றும் சிகிச்சையுடன், down syndrome உள்ள பலர் மகிழ்ச்சியான, ஆரோக்கியமான வாழ்க்கையை வாழ்கின்றனர்.

பல ஆண்டுகளுக்கு முன்பு, டவுன் நோய்க்குறியு உள்ள ஒரு குழந்தை பிறந்தால், அவர்கள் மிக நீண்ட காலம் வாழ்வார்கள் அல்லது சாதாரண பள்ளிக்குச் செல்வார்கள் என்று எதிர்பார்க்கப்படவில்லை. அவர்களுக்கு ஒரு தொழில் அல்லது திருமணம் எதுவும் இருக்கவில்லை. மருத்துவம் மற்றும் சமூக அணுகுமுறைகள் மற்றும் மேம்பட்ட சமூகத்தின் முன்னேற்றங்களுக்கு நன்றி இந்த நாட்களில், அவர்களின் ஆயுட்காலம் 60 ஆண்டுகள் ஆகும்.

down syndrome kid

Down syndrome உள்ள குழந்தைகளுக்கு ஒரு உத்வேகமாகவும், அவர்களுக்கு வண்ணமயமான உலகத்தை உருவாக்குவதற்கு ரோட்டராக்டர்களால் යාலுva, கடந்த 08 ஆண்டுகளாக மேற்கொள்ளப்படும் ஒரு திட்டமாகும். இலங்கையில் down syndrome நோயால் கண்டறியப்பட்ட குழந்தைகளின் வாழ்க்கையை மேம்படுத்தும் நோக்கத்திற்கு ஏற்ப பல திட்டங்கள் தொடர்ந்தும்  நடத்தப்பட்டுகின்றன. அவ் வகையில் இவ் வேண்டும் அத் திட்டமானது நடைபெற்று வருகின்றது.

அவர்களின் கைகளைப் பிடிப்போம், ஏனென்றால் நாங்கள் வித்தியாசத்தை விட ஒரே மாதிரியாக இருக்கிறோம். Down syndrome உள்ள அன்பான ஆத்மாக்களுக்கு இந்த உலகத்தை சிறந்த இடமாக மாற்றுவோம். நண்பர்கள் குரோமோசோம்களை எண்ண மாட்டார்கள் என்பதை நினைவில் கொள்ளுங்கள்.

down syndrome 2

Penned by : Rtr. Sakuni Galappaththi (Co Editor 2020/21)

Edited, translated and published by : RACSLIIT Editorial team 2020/21

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