Beacon of hope for the less fortunate

world Down Syndrome Day today
At Hushundi Bazaar of Gozaria Upazila in Munshiganj district, Nuruzzaman had long been known as Nura Pagla. With his flat face and short neck, Nuruzzaman had a look which most people in the countryside considered as being bit “creepy”. Plus, his speech disorder added insult to the injuries. However, it was the people who had made him more “sick”’ than he really was and it was aggravating over time.

When Sardar A Razzak, a social activist and the executive director of the Association of Medical Doctors of Asia (AMDA), spotted Nuruzzaman at Hushundi Bazaar in 2013, the 17-year-old boy was almost on the verge of insanity.

Razzak, however, realised that Nuruzzaman was not insane or mad. Rather he was suffering from Down Syndrome—a genetic disorder that most people in Bangladesh are still unaware of.

Razzak happens to be the founder president of Down Syndrome Parents Support Group—a platform that started raising awareness about Down Syndrome in Bangladesh. He took Nuruzzaman under his wing and started providing him with trainings and treatment.

Now at the age of 24, Nuruzzaman is working as an office assistant with AMDA in Gozaria. He has also been recovering from his speech disorder with regular speech therapy. “He is doing well in his job. In fact, Nuruzzaman is more sincere than any other employees in the office,” said Razzak.

A movement started by a father

Razzak knows and understands the perils that a child with Down Syndrome suffers. His youngest son, Rafan Razaak, is one such child.

When Rafan was born in 2008 at Japan-Bangladesh Friendship Hospital in Dhaka, the doctor found the newborn baby a bit abnormal. “Rafan was very floppy when he was born. He was put in Neonatal Intensive Care Unit (NICU). Within a few days, we opted for performing a Karyotype on him.”

Karyotype is a test to identify and evaluate 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. Those two weeks were the most anxious times me and my wife Shahanaz Parvin Chowdhury have faced in our lives. The result showed that our son had Trisomy 21, which meant that he was suffering from Down Syndrome.”

Razzak also said that it was hard for them as parents to accept their child’s fate. “But a child was born to us, and it was our duty to love him and nurture him like the way we were nurturing our other two children.”

To take care of Rafan properly, Razzak started studying about Down Syndrome. He also contacted a lot of communities working on Down Syndrome in different countries. After two years of studying and networking with other communities, Razzak finally planned to create a platform for working on Down Syndrome in Bangladesh in 2010.

“There was no organization working to raise awareness for Down Syndrome in the country. I identified that most Down Syndrome patients were being treated as patients with intellectual disability (ID). But Down Syndrome patients and ID patients are not the same at all,” he said.

Razzak contacted Down Syndrome International (DSI), the UK-based cross-border organisation working on the disorder, and told them about his plan of opening a platform to work with the Down Syndrome patients, especially children, in Bangladesh.

“I was greatly motivated by the DSI, and they told me that they would provide me with all sorts of information and necessary aid. I thus formed ‘Down Syndrome Parents Support Group (DSPSG)’ in Bangladesh as part of AMDA,” he added.

A beacon of light for many

Since its inception, DSPSG has been considered as a lighthouse for the parents of kids suffering from Down Syndrome. Mahbubul Monir is one such parent who has been attached with DSPSG since the beginning. His 20-year-old son, Mohammad Ahnaf Rafi, suffers from Down Syndrome. “Another of my sons is suffering from Autism. I don’t consider them as curses, but rather as blessings from God,” he said.

Monir, a general manager with Petrobangla, said that society considers children like Rafi as some sort of “freak show”. Whenever they used to go out with Rafi, people used to give him a strange, and to some extent, disgusted look.

“But he is my son, and it hurts me and my wife. I believe most of them have a lack of understanding of what Down Syndrome is. Even I didn’t properly know what it was before joining DSPSG,” said Monir

After the formation of DSPSG, Razzak visited Monir at his office one day and asked him to join the organisation. Monir immediately agreed as he also wanted to raise awareness about Down Syndrome in society. Besides, finding other parents and sharing experiences with them proved to be a great stress reliever for parents like Monir and Razzak.

DSPSG now has an active membership of 300 parents across the country. Since 2014, it has been observing World Down Syndrome Day in Bangladesh on March 21 along with other countries in the world. Razzak said that from a support group, they are now planning to give it a larger organisational structure by forming Down Syndrome Society of Bangladesh. “We have already got clearance from the government to form the society. If it is established, we would be able to conduct our activities in larger manner,” he added.

They also have established two resource centers—one in Dhaka’s Banasri and the other in Gozaria upazila in Munshiganj—to provide better education to children with Down Syndrome and also to provide all sorts of information and support to the parents.

There is a common notion among the parents that their children suffering from Down Syndrome have to go to special schools. Razzak, however, believes that regular school is a better place for such children as it provides a better chance of social inclusion and acceptance.

“Rafan is now studying in a regular school. He was initially given education at the special school. But I got him admitted to the regular school. I believe it is important as it helps build self-belief in the child,” Razzak said. “It also grows acceptance and awareness among other children about Down Syndrome,” he added.


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