At Hushundi Bazaar of Gozaria Upazila in Munshiganj, Nuruzzaman had long been known as Nura Pagla. With his flat face and short neck, he was considered ‘unnatural’ by most of the rural population. The speech disorder that he possesses only made things worse. However, it was the people around him who made him more ‘sick’ than he really was with their limitless prejudice.
When Sardar A Razzak, Executive Director of the Association of Medical Doctors of Asia (AMDA) found Nuruzzaman in 2013, the 17 year old boy was almost on the verge of insanity. Razzak was the first person to properly diagnose his condition - Nuruzzaman was suffering from Down Syndrome, a genetic disorder that most people in Bangladesh are unaware of.
Razzak, who is also the founder president of Down Syndrome Parents Support Group, an awareness-raising platform, brought Nuruzzaman under his wing and started providing him with treatment.
Now at the age of 21, Nuruzzaman is working as an office assistant at the AMDA office. He has also been recovering from his speech disorder through regular therapy.
“He is doing well in his job. In fact, Nuruzzaman is more sincere than any other employee,” said Razzak.
A movement started by a father
Sardar A Razzak understands the difficulties of Down Syndrome sufferers better than most people. When his youngest son Rafan Razaak was born in 2008, he was put in the Neonatal Intensive Care Unit and was asked to get a Karyotype test.
Karyotype identifies and evaluates the size, shape, and number of chromosomes in a sample of body cells. Extra or missing chromosomes, or abnormal positions of chromosome pieces, can cause problems with a person's growth, development, and body functions.
“It usually takes about two weeks to get the result of Karyotype, which showed that our son had Trisomy 21. This meant that he was suffering from Down Syndrome.”
To take care of Rafan properly, Razzak started studying the condition, and contacted groups working with Down Syndrome in different countries. After two years of learning and networking, in 2010 he decided to create a platform in Bangladesh to raise awareness on Down Syndrome.
“Most people with Down Syndrome are treated as patients with intellectual disability in their communities, but this is not the same thing at all.”
Razzak contacted Down Syndrome International (DSI), a UK-based cross-border organisation, and told them about his plan.
“I was greatly motivated by the DSI and they told me they would provide me with all sorts of information and necessary aid. To this effect, I formed Down Syndrome Parents Support Group (DSPSG) in Bangladesh, as a part of AMDA.”
A beacon of light for many
Mahbubul Monir is a parent who has been attached to DSPSG since its inception. His 20 year old son Mohammad Ahnaf Rafi suffers from Down Syndrome.
“My other son has autism. People may disagree, but I still consider them to be blessings from God.”
A General Manager at Petrobangla, Monir said that society considers children like Rafi to be 'freaks'. Whenever they went out with him, people used to give them strange and sometimes even disgusted looks.
“But he is my son and it hurt us a lot. Most of these people have no understanding of what Down Syndrome is. Even I didn’t properly know what it was before joining DSPSG.”
Monir was one of the first people asked by Razzak to join the DSPSG, after its formation. Monir immediately joined, since he wanted to raise some much-needed awareness on Down Syndrome. Besides, finding other parents and sharing their experiences prove to be a great stress reliever for parents like Monir and Razzak.
DSPSG now has 300 active members across the country. Since 2014, it has started observing World Down Syndrome Day in Bangladesh on March 21.
Now, DSPSG are planning to evolve into a larger organisational structure from a support group by forming Down Syndrome Society of Bangladesh. “We have already got clearance from the government. If it is established, we will be able to conduct our activities on a larger scale.”
They have also established two resource centres - one in Dhaka's Banasri area and the other in Gozaria, to provide better education to children with Down Syndrome as well as information and support to parents.”
There is common notion that children with Down Syndrome have to go to special schools, but Razzak believes that regular schools are better places for these children and gives them a better shot at social inclusion and acceptance.
“Rafan is now attending a regular school, after having initially gone to a special one. I believe it is very important, since it increases the self-confidence of the child as well.”
“It also increases awareness amongst other children about Down Syndrome.”
Down Syndrome is named after John Langdon Down, the 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.