Amal Tolba, from Egypt, is a mum of three (13, 10 and 4 years) including her youngest child, Darah, who has cerebral palsy. She is also the founder and managing director of hope AMC, an interdisciplinary paediatric neurological rehabilitation centre in Dubai

"At Exactly 40 Weeks and three days into my third pregnancy, my contractions started. I'd had a very easy pregnancy, and when I arrived to the hospital in Cairo everything was perfect, we were even joking about the whole thing.

But then I was administered an incorrect epidural that caused my heart rate to drop and, as a result, the baby's heart rate dropped too. An Emergency C-section was performed too late, which meant my baby Darah suffered oxygen deprivation - also known as birth asphyxia - which can cause brain damage or even death. So we are very lucky to still have her here.

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"We were told there had been complete organ failure as well as brain damage and, because my husband is a surgeon, he explained to me from the get-go that it if Darah made it out of NICU It was highly likely she would be a disabled child. She had been a 4.2kg healthy baby before all of this.

"The hardest part was coming home without a baby, and having to explain to her happy and excited older siblings that their baby sister who we'd decorated the house for wasn't coming home yet.

"We spent 6 weeks in NICU, had several procedures done, and finally left the hospital with a medically complex child. We were told she would not live long.

"But fast forward to today and Darah is a happy four-year-old who is very aware and can communicate in her own way. Darah has cerebral palsy.

 "My main struggle when I was discharged was that I was not offered any support or advice on what to expect - it was just a wait-and-see game. I didn't even know anyone with a disabled child to connect with. This made me determined to establish my own support network.

"I started travelling around the world to find therapies that would help my daughter. We also relocated to Dubai when Darah was six months old in hope of finding better help here. I began meeting mothers with children of special needs and I started up a support group that I called 'Beautiful Mums'. It grew from just four mums to 100-plus mums today. I didn't want anyone else to feel as alone as I did. So in this group we laugh, we vent, and we hold each other's hand in time of need.

"For three years I continued to travel, and found brilliant therapies from across the world, some of which had never been heard of in the Middle East. Because of these therapies and treatments, Darah started to progress and even her doctors were surprised.

"But the travel took its toll on me, and it was hard to leave behind my other children. It was then that I decided I did not want any other family to suffer; I wanted the knowledge that I have now to be available for everyone. This is why I founded Hope AMC. Hope AMC is not just a therapy centre. It's a place that gives honest advice to fellow parents and offers the best therapies tailored to every child's individual needs. We involve siblings in fun activities like art and football, and we take care of the mums through support groups, coffee mornings and workshops.

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"It's not easy to have a child with special needs and two other children, but I've learnt that there is no way to happiness: happiness is the way. My other children are now more empathetic than most children their age. It's helped them become responsible and reliable and even the best advocates for disability.

 "Darah is the reason I get up every day. She has given a new meaning to my life. Darah made us appreciate life for what it is and I love our challenges with her.

"We love living in Dubai and we truly feel blessed with the emphasis on inclusion and respect they have for special needs.

"One thing that I've learnt the hard way is that the future is not ours: only today is. Life is here, life is now. So I will enjoy my Darah, my other children, my family and my life right here, right now. I will not wait for tomorrow or for something to change, because it might not. My only mission right now is to raise awareness and promote inclusion hoping for a better world for Darah and all the special children

 "My message to other parents is this: When you see a child with special needs, do not look away. Instead, please look their way and acknowledge them with a smile they can feel."

Get Involved

Hope Abilitation Medical Center is based in Umm Suqeim and holds regular coffee mornings and support groups for parents, as well as offering a range of therapies for young people with disabilities. If you are interested to join the WhatsApp support group 'Beautiful Mums' started up by Amal, you can call Hope AMC and leave your number.
0529997075, 043460066, info@hope-amc.com

Photos by Anas Thacharpadikkal

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