• Tuesday, Aug 03, 2021
  • Last Update : 03:56 pm

Living with Down Syndrome

  • Published at 10:49 pm March 20th, 2020
Down Syndrome
Children with down syndrome at the office of the Down Syndrome society of Bangladesh at Banasree, Dhaka Mahmud Hossain Opu/Dhaka Tribune

In recent years, down syndrome has become more common, and the life expectancy of people with down syndrome has increased

People are not aware of what Down Syndrome is, speaking about the lives of those who live with it might be an eye-opener for many.

An organization, Down Syndrome Society of Bangladesh, is working relentlessly to enlighten people about the syndrome and creating a platform for people with down syndrome to build a good life.

17-year-old Nuruzzaman was known as Nura Pagla at Hushundi Bazaar of Gozaria Upazila in Munshiganj. 

His different physical appearance and speech impairment led the population to address him as “retard.”

However, the lack of support and empathy from the people around him led him to become further unwell.

Seven years ago Nuruzzaman begged in the market. Now at the age of 24, Nuru is working as an office assistant at the Association of Medical Doctors of Asia (AMDA) in Gozaria.

Sarder A Razzak, executive director of AMDA found Nuruzzaman, begging for two takas, wearing dirty torn clothes.

Razzak was the first person to properly diagnose his condition - Nuruzzaman was suffering from Down Syndrome, a genetic disorder (extra chromosome, trisomy 21) that most people in Bangladesh are unaware of.

Nuruzzaman has been giving self-advocacy training for the last six years from the platform “Down Syndrome Society of Bangladesh.”

Razzak, also the chairman of Down Syndrome Society of Bangladesh, told Dhaka Tribune: “I brought Nuruzzaman under my wing and started providing him with appropriate treatment.

“He has also been recovering from his speech impairment through regular therapy. He is doing good in his job, and he is more sincere than any other employee.”

Social activist Razzak is doing a survey on Gozaria Upazila. From a population of 20,000 in Gozaria 24 people are suffering from down syndrome, aged between six months to 35 years.

Another study on Cox's Bazar main town showed that out of 25,000 people 20 have down syndrome.

In recent years, down syndrome has become more common, and the life expectancy of people with down syndrome has increased, said recent statistics on down syndrome in the United States of America.

Down Syndrome International (DSI), a UK-based cross-border organisation said, each year, about 6,000 babies are born with down syndrome, which is about 1 in every 800 babies born.

Now in Gozaria, there are 13 self-advocates (aged 18-35) of down syndrome who are working in AMDA Agro Ltd to produce mustard oil and yogurt.

Down Syndrome Parents Support Group (DSPSG) in Bangladesh is a part of AMDA and DSI provides all sorts of information and necessary aid to them.

When Sarder A Razzak’s son Rafan A Razzak was born with down syndrome in 2008 the Razzak couple started learning and researching about down syndrome.

Razzak said at that time Bangladesh had no information on the subject. 

Mother Luna Razzak said: “I was not upset at all, but started to look for ways to bring him up like my other two sons.”

Challenge

After two years of Rafan’s birth, they decided to create a platform “Down Syndrome Society of Bangladesh” to raise awareness.

Luna said I wanted to give my son a normal life. For that reason, we contacted Down Syndrome International and told them about our plan.

They started working with Down Syndrome Society of Bangladesh in 2014.

Till now Bangladesh has no specific statistic about its down syndrome population. 

Down Syndrome Society of Bangladesh began forming a census by contacting every special school. That, however, requires a lot of time.

For the last four years, Rafan has been studying in the mainstream curriculum in Banasree Ideal School side by side with other children. 

He attends every exam and was promoted to his new class, standard three.

Luna added: “The hardest challenge for us is introducing them to the world.”

32 years old Sultana Musfica Phool a self-advocate of Down syndrome said: “We cannot go out alone for work because the society does not allow it.” 

“We do not think about marriage like normal people. We just want to be able to work to be self-dependent.”

A role model for many

Sarder A Razzak, Chairman of Down Syndrome Society of Bangladesh said: “We just want Rafan to be a role model in Bangladesh. We want him to be an example for other families and make them realize that with proper guidance the children can lead their life like every other person.

“Our target is to empower people with down syndrome for advocating their effective and meaningful participation, which might make key stakeholders aware of this message and bring about a change,” he added.

Rafan said: “I love to sing and dance. I can sing hundreds of Bangla and Hindi songs. But I do not like mathematics.”

Snigdha Chowdhury Educator at the Down Syndrome Society of Bangladesh said, these kids easily sense who is accepting them and who is not. Kids will be hugging them at the first meeting. 

“We are saying that they are the loving chromosome,” she said.

She added: “Since learning is a conditional task, they do not like it at all. Out of our 13 kids in down syndrome education section, five are studying in a normal school.” 

Japan Bangladesh Friendship Hospital, AMDA Bangladesh, Robi Axiata and other organizations observed the world Down Syndrome Day on March 21, 2014, for the first time in Bangladesh.

In early 2015 Down Syndrome Society of Bangladesh started a school which had a Dance Group, Self-advocate Group, Siblings Group, Down Syndrome Education, and the Down Syndrome Voice for the kids.

Sardar A Razzak, also one of the directors of Japan Bangladesh Friendship Hospital said: “We created a doctors interest group. From 100 Karyotype test, we found 10-15 Down syndrome. In this hospital yearly 700-1000 children are born and 1-2 babies are born with down syndrome.”

15th World Down Syndrome Day

World Down Syndrome Day (WDSD) is observed on March 21 every year. This year DSI is delighted to announce the theme for WDSD 2020, which is “We Decide.”

They elaborated that all people with down syndrome should have full participation in decision making about matters relating to or affecting their lives.

Bangladesh also observed the day with the slogan - “We will participate in everything, we will decide on our own.”

Down Syndrome Society of Bangladesh is only a non-government platform for people with down syndrome to help change their world and assist them in special needs advocacy, education, employment, and social inclusion. 

Presently the organization has three thousand members.

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