“Although she doesn’t speak… Zara has taught me many things – how to face adversity, the real meaning of unconditional love, and courage. She is my angel” Image Credit: Grace Paras/ANM

I met my husband Zeheer in India when I was 18. He was my first – and only – love. Zeheer worked at sea and was often away. We got married and had our first daughter, Jenai, in 1989. When she was seven years old I fell pregnant for the second time. Zeheer no longer wanted to be away from us so he looked for a shore job. We were delighted when, 15 years ago, he found work at Drydocks World in Dubai.

“As soon as we moved I began volunteering at the Dubai Centre for Special Needs (DCSN). I have always enjoyed interacting with children with special needs; they are so loving and easy to be around.

As a graduate of Applied Arts, I became involved in the DCSN art programme and I found it so rewarding. Life was good. Jenai was settling at school, Zeheer was no longer travelling and I was enjoying my role at DCSN. We excitedly awaited the birth of our second child.

Discovering the truth

“Zara was born in May 1997 – a beautiful, healthy baby girl. One night, when Zara was four months old, I woke to find her having severe convulsions. By the time we got her to the hospital she was blue and limp. The doctors said it was febrile seizures, probably brought on by a high temperature. Though horrific, we were made to believe it was a one-off incident.

“Two months later it happened again, then again. The seizures continued, becoming more frequent and persistent, some days occurring once, other days up to 15 times. Doctors eventually diagnosed her with Dravet Syndrome. We were told the news no parent ever wants to hear – that each seizure caused regression that would ultimately lead to profound retardation.

Finding acceptance

“What followed was a period of desperation. I scrambled for everything and anything to ‘cure’ her. I looked for community support but there was none. Instead I found a society that was quick to shun, even lock away children with special needs.

I now recognise the emotional stages I went through – first denial, then guilt, self-pity, anger and, finally, hopelessness.

“Then, when Zara was two-and-a-half years old, I finally learnt something very special – acceptance. As soon as I learnt to accept Zara for who she is, she began to make me feel whole again. I am now incredibly proud of Zara. She never asks for anything and she has never hurt a soul. Although she doesn’t speak, through her I have learnt resilience. She has taught me to become the person I’m meant to be. Zara has taught me many things – how to face adversity, the real meaning of unconditional love, and courageousness. She is my angel. Zara is now 15 and over that period of time I have gone from ‘why me?’ to ‘why not me?’ Now I thank God it’s me.

“From personal experience I knew there was a real gap in UAE society in terms of attitudes towards special needs. With my newfound acceptance I felt such determination to bridge this gap. I wanted to tell everyone that it’s OK to be different.

“In 1999 I invited six other families who had children with special needs to a meeting in my living room. I felt my experience could help them and at least let them know that they weren’t alone. From that day on, Special Families Support Group (SFS) was born and has since blossomed – currently we have more than 200 families and 100 volunteers across the UAE. I have also taken the model elsewhere – SFS has chapters in Abu Dhabi, Bahrain, Bangalore and Chennai.

“The idea is so simple – to enjoy your child. SFS holds many public events every month – picnics, fashion shows, dance performances, parties, awareness programmes and the most eagerly awaited event of the year, the annual summer camp. It’s about having fun, community recognition and letting society know that being special is to be celebrated. I never want anyone to feel as alone as I once did.

Recognition in art

“It is humbling that my efforts have been recognised in many awards over the years, including a Princess Haya award in 2009 for pledging my life to helping those with special needs.

"All I am really doing is passing on the knowledge that Zara has taught me. I believe art is a way forward as it’s such an effective means of expression. I still volunteer at DCSN, where Zara is at school. I’m also lucky to be the art teacher at Mawaheb, a wonderful and inspiring studio for young adults with special needs that was set up in Al Bastakiya two years ago.

"I teach my special artists that art is like life – a blank canvas that forces us to face our fears, find solutions, take risks, make mistakes and accept that not everyone has to like it. The artists at Mawaheb have grown immensely. It is evident in their self-confidence, bold strokes and their eagerness to create more. Anyone with special needs has potential; my goal is ultimately to help them find it. A great teacher is a great artist, but her medium is not a canvas, it’s the human soul.”