Trauma led to formation of support network

DUBAI // The Special Families Support Group was born out of a desperate quest more than a decade ago.

Gulshan Kavarana, an Indian expatriate, was struggling with her four-month-old daughter, who had Dravet's Syndrome. The condition is characterised by severe epileptic seizures and can lead to disabilities that require the use of a wheelchair.

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Mrs Kavarana tried to contact other parents, so they could share experiences and coping strategies, and fight their feelings of isolation. At first she could not find any, but slowly she established a group of six families that held their first meeting in her living room.

"I was on the verge of a breakdown," she said. "I couldn't find the support I needed to deal with this unexpected responsibility. It can be daunting to raise a child with a disability."

The group has grown to more than 200 families from Abu Dhabi, Dubai, Ajman and Sharjah. The SFS meets once a month at picnics held at beaches and parks. It organises dance performances, parties and fashion shows to integrate students and other families with people with special needs and holds a free annual summer camp in Dubai. The month-long camp, which starts on July 3, provides free transportation to volunteers and families and is open to all.

Mrs Kavarana, 47, now works as an art teacher at the Mawaheb (talented) Special Needs Studio. Her daughter Zara is 14. Even though her situation was daunting to deal with at first, Mrs Kavarana said the lessons she has learnt have been life-changing and made her stronger.

"My daughter taught me strength, courage and the real meaning of unconditional love," she said.

"All mothers with children who have special needs go through similar emotions of guilt, denial, self-pity, anger, hopelessness and finally the process of acceptance. Once you learn acceptance, these children can make you feel whole again."

Information about the SFS and its activities is available online at www.sfs-group.net

rtalwar@thenational.ae