Rabia a daughter, wife, artist, interior designer, painter, teacher and above all a mother whose life made a paradigm shift when she was blessed with a beautiful daughter named ‘Aliya – My Apert Rose’ as she likes to call her.
Rabia is a mother of a son and a 2-year-old daughter ‘Aliya’ who is born with a rare syndrome called the Apert Syndrome. It is a rare genetic anomaly that occurs at the embryonic stage. Infants born with this condition have a craniofacial disorder which means that the bones of the skull fuse prematurely causing the appearance of a concave face, wide-set eyes, and beaked nose. Aliya was born with no fingers, and infused toes, along with a distorted skull. A rare genetic disorder found in 1 in 2 million births. Rabia found out about her child’s physical condition after birth. Little did Rabia know that this girl will change her life forever and shower her parents with love, determination, and the will to live a normal happy life under any circumstances. The children born with the Apert Syndrome, in some instances have a disruption in intellectual growth, certain visionary and hearing discrepancies as well.
Rabia upon the birth of her child and with the support of her immediate family members became the voice of her daughter, the strength that she thought she never had. A mother in her possessive streak of nature does all that she can to protect her child. Rabia is an example of that mother, who positively changed her life around, discarded the lonely self-pity, clichéd statements, and taboos out of her life. She became her child’s strength, voice and accepted it as ‘Normal’.
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The first message Rabia likes to give to any parent especially mothers of the special children is “to shed off that self-pity and to become the best advocate for your child. There is an absolute need to raise your voice for your child, for the pain they bear every single day in a society like ours, that keeps asking for explanations”. “There are no explanations, and I am not liable to give any explanations,” says Rabia while wearing an armor of strength. She accomplished her mission and made Aliya functional, to do what every other child does while growing up.
A week after birth, Rabia was heart-broken, confused and yet not knowing how to care for her daughter. She started looking out for pediatrics, physiotherapist and other medical services that could give her a more valuable answer.
Most doctors asked Rabia why DID she not abort the child in her sixth month of pregnancy
How cruel are we as a society, inconsiderate, inhumane, barbaric and small-minded people. Where is all that humanitarian spirit that we see in times of natural disasters or is it just saved and cooped up for that purpose only. Why can we just not show any signs of compassion to a mother, a parent asking for medical help. Medical healers, and surgeons who can only say that take your daughter back home and give her a whole lot of love. I find it profanity to humankind, I feel we as a society come under the “‘Social Model of disability’ – whereby we as humans are more disabled by the society we live in rather than our bodies” as mockingly narrated by Stella Young a comedian, journalist, and activist.
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Nevertheless, this only guided Rabia to become her own teacher and her own doctor. She started networking with people, in search for different support groups and forums that helped parents of Apert Syndrome children to understand how she could make her daughter’s journey better. After an endless search for answers, she came across a doctor in Dallas, who is an expert at Apert Syndrome and promised to do the best for Aliya.
After a total of seven surgeries, Aliya a child of 15 months, for the first time was able to see nine fingers on her hands and had a tube in her ear to hear properly. Furthermore, she went through a skull remodeling surgery and had started to stand up on her own two feet with support. It was time for Aliya to come back to Pakistan where the society was not welcoming and ignorant. Rabia’s will and support to get her daughter through these surgeries are a testament to all medical practitioners that with strength and the spirit to live, anything is achievable.
However, Rabia’s battle did not end here, in fact, it started off a new chapter in her life as she created noise, awareness and built a platform for parents alike. She has found many families like hers who have children with Apert Syndrome. She not only helps educate them but offers advice and play dates with Aliya.
Mothers now have a voice, through the Special Needs Pakistan. They have found a torch, a mentor in Rabia, who has opened doors and avenues for parents like her. She was a recent TEDx Karachi speaker, who proudly brought her story and has started a university and school drive, making students and parents more aware of this disorder. She regularly makes Aliya as much a part of society as any child, taking her out to public places and parks, making sure whoever is starring at her worth her while. Aliya is now two, a happy healthy child, who has an attitude of her own, reacts very well to music and art, as she progresses to speak with the help of speech therapists. As Rabia voices out, “Aliya is my attitude, and I wear her every day”.