Dance that beats Down’s Syndrome

When Kosala Dullewa was born, his mother Saroja was overcome with sadness. The firstborn whom she had so many dreams for had Down’s Syndrome. For husband Lalith Dullewa and her, at first it felt like their world had come to an end.

Gradually, their sorrow has turned to joy and celebration. “Kosala is my life and has brought so much joy to those around him. Life will be more of a challenge but we couldn’t imagine our world without him,” Saroja now says.

She tearfully describes the uphill task of bringing up Kosala. She hadn’t known of the condition when he was born. It was only when she took him to the doctor when he was barely a month with problems in suckling and dehydration, that she was told.

Life totally changed for her. She resigned from her lawyer’s job for eight years to take care of her precious son whom people seemed to regard with pity or distaste. Her husband who was abroad then provided all the encouragement she needed. “He could not learn or behave like other children.” Most difficult to accept was the fact that there was no cure. “Once I accepted it, it became easier,” she recalls. “It was not his fault. If I don’t love him who will look after him?” she reasoned.

To say that the period thereafter was filled with trials is an understatement. He needed support to even walk and eat, unlike her two normal younger children Bimsara and Kumara. “However, I did not want to hide him from society – for how could he do what other children did without seeing and hearing them?”

Despite rejection at some institutions, Kosala was admitted to Montessori and later to the special education unit at D.S. Senanayake where he studied until 13 while simultaneously undergoing sessions in speech therapy. All the while Saroja earnestly prayed that she be fit to take care of him.
Amazingly, throughout his childhood, Kosala’s family noticed that he liked music and rhythm. He would imitate dancers on TV. “He had an inborn talent for dance,” Saroja states. Kosala took to dance classes like a duck to water and in 2004 had a 2 ½ hour performance at BMICH. He also performed elsewhere and won awards.

“Through his performance, he has shown society what a child with his condition is capable of,” Saroja stresses. Other families with children who have DS can take hope from this, she says. Above all Saroja and Lalith gave Kosala their love. “If we stand by our children, they can develop,” they say, still unsure of what the future holds for them. To them, Kosala is a jewel in the family – a great source of joy.

Established in 2006, the Kosala Dullewa Foundation (KDF) for children with special needs aims to assist underprivileged children with different mental disabilities to enhance their educational, aesthetic, and recreational skills with the ultimate goal of changing the attitudes of society towards them.

Director (Youth, Elderly, Disabled and Displaced Persons), Ministry of Healthcare and Nutrition, Dr. Deepthi Perera stated that globally, one in a thousand children is born with DS. At the medical camp to be held on March 24, she said parents can have medical screening for their children and understand the main problems they would encounter. Referrals will also be made to the respective hospitals by consultants.

Said Senior Registrar, Lady Ridgeway Hospital, Dr. Sooriya Wijewardena, “Just like each child has different capabilities, children with DS also have different capabilities. We need to support them to achieve their maximum potential.”

Their disorders pertaining to poor muscle tone, visual and hearing problems and learning difficulties can occur in normal children too, he says.

Coordinator, Legal Aid Commission, Ms. Kalani Medagoda stated that all people are entitled to equal protection by the law. “Ignorance of the law is not an excuse. We have a responsibility to make people aware of the law,” she said.