KANNUR: The Down Syndrome Support Group aims to provide a common platform for the parents to share their experiences. It helps them gain new insights on the condition and gather information about different govt schemes, reports M A Rajeev Kumar
They are happy children, quite unaware of the misfortune that has befallen them. But their parents are often left desolate and desperate, for they know they have to carry on the fight through their lives. That’s where DoST (Down Syndrome Support Group) steps in. Formed in 2021 by the Kannur branch of the Indian Academy of Paediatrics (IAP), the group is attempting to help the parents take better care of children with down’s syndrome while coming to terms with the reality themselves.
“These children and their parents need special care as they are fighting a difficult battle,”says Dr Mridula Shankar, secretary of IAP, Kannur. DoST aims to provide a common platform for the parents to share their experiences and apprehensions, and gain new insights on the condition and access information regarding different government schemes for the differently-abled.
The Kerala chapter of IAP first thought about such a support programme in 2020 but the Covid outbreak delayed its launch. In March 2021, the Kannur unit took the initiative and formed a group.“The name DoST was introduced by the support group in Kozhikode. But as they had to stop the work, we adopted the name,” says Dr Mridula.
On March 21 this year, on the World Down Syndrome Day, around 35 children and their parents gathered at the Kannur Chamber of Commerce Hall to celebrate the first anniversary of DoST, their friend in need. And they all looked happy and ready to move ahead with life, singing and dancing and participating in interactive sessions. They felt they are not alone, Dr Mridula says.
“While the children require continuous treatment, their parents also need support as they carry the heavy burden of sadness and frustration, coupled with a feeling of uncertainty about the future of their children.” Around 60 children and their parents are now part of DoST, she points out. “Our prime concern is providing mental support to parents. We also guide them regarding checkups and treatment. Usually, the service of a paediatrician isn’t enough as their ears, eyes and skin too have to be checked periodically.”
Prajith Kumar PT, a Pariyaram resident, says the DoST initiative has been immensely beneficial to the parents of children with down syndrome. “The group takes up parents’ concerns and provides prompt support, especially with regard to the provisions to avail government benefits. While the parents are ready to do anything for the welfare of their children, a lack of awareness often proves a hindrance. DoST is a welcome relief in that regard,” he says. The group is planning to organise programmes more frequently now that Covid-related restrictions have been lifted.