World Down Syndrome Day: Our Children Should Be Able to Be Involved in Social Life

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Today is known as World Down Syndrome Day by United Nations’ decision dated November 10, 2011. The reason for it to be celebrated on March 21 is that they have three instead of two 21st chromosome, so the numbers 21 and 3 were chosen for the celebration.

There are some 6 million individuals with Down syndrome living in the world. There is no specific data in Turkey but there are estimated 70 thousand individuals with Down syndrome living in Turkey, according to Association for Down Syndrome.

Down syndrome, which is a genetic difference, is actually a chromosomal aberration. The number of chromosomes in an ordinary person is 46. This figure is 47 in individuals with Down syndrome since they have three 21st chromosome instead of two.

Established step-by-step and turned into a movement of awareness in Turkey, Association for Down Syndrome says, “Down syndrome is not a disease that needs to be treated, it is a genetic difference”.

"We don't want to hear words such as 'what a pity, oh dear'"

Journalist Canan İspir, mother of a child with Down syndrome, says that other children are not “different than her child but the same”, and she doesn’t want to hear words such as “what a pity, oh dear”. İspir carries on:

“We don’t want them to be treated like a child who doesn’t grow up. We want them to be treated accordingly with Constitution Article 42 regulating the principle ‘everybody has equal right to education’ and want them to enjoy this principle equally.

“We also want these children to receive education with other children through inclusion system, not in special low classes so that the other children can learn that society consists of different colors”.

“8-hour education per month is very insufficient”

“They need to receive training in their babyhood since 2 months old but in order to enjoy the right of free training provided by the state for two hours per week, you first need to get a report of disability from hospital. However, this report is not given before 1-year-old and the training of 8-hour per month is very insufficient.

“The speaking therapy, which is mandatory for our children to be able to be involved in social life is not included in these reports and they are very costly, making inaccessible for many families”. 

Down syndrome (DS or DNS), also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability. The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an 8- or 9-year-old child, but this can vary widely.

The parents of the affected individual are typically genetically normal. The extra chromosome occurs by chance. The possibility increases from less than 0.1% in 20-year-old mothers to 3% in those age 45.There is no known behavioral activity or environmental factor that changes the possibility.] Down syndrome can be identified during pregnancy by prenatal screening followed by diagnostic testing or after birth by direct observation and genetic testing. Since the introduction of screening, pregnancies with the diagnosis are often terminated. Regular screening for health problems common in Down syndrome is recommended throughout the person's life.

There is no cure for Down syndrome. Education and proper care have been shown to improve quality of life. Some children with Down syndrome are educated in typical school classes, while others require more specialized education. Some individuals with Down syndrome graduate from high school, and a few attend post-secondary education. In adulthood, about 20% in the United States do paid work in some capacity, with many requiring a sheltered work environment. Support in financial and legal matters is often needed. Life expectancy is around 50 to 60 years in the developed world with proper health care.

Down syndrome is one of the most common chromosome abnormalities in humans. It occurs in about one per 1,000 babies born each year. In 2015, Down syndrome was present in 5.4 million individuals and resulted in 27,000 deaths, down from 43,000 deaths in 1990. It is named after John Langdon Down, a British doctor who fully described the syndrome in 1866. Some aspects of the condition were described earlier by Jean-Étienne Dominique Esquirol in 1838 and Édouard Séguin in 1844. In 1959, the genetic cause of Down syndrome, an extra copy of chromosome 21, was discovered.

(Source: Wikipedia)

(PT/TK)

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