Rabia’s rose

In Aaliya’s unique syndrome, Rabia finds a mammoth challenge — and an opportunity to fight taboos

There was silence in the maternity ward. Then, nervous whispers.

“The nurses looked scared,” says Rabia Aziz, recalling the moment of birth. “I sensed uneasiness behind the screen of the C-section. And then they asked, ‘Would you like to see your baby?’”

Little Aaliya was born with an oddly shaped skull, no fingers and fused toes – clear signs of Apert’s syndrome, an incurable genetic disorder which affects one in 65,000 babies.
“You know one of those nights when you pass out and don’t remember how you slept? I haven’t had one of those in three years,” Rabia says.

Apert’s babies have difficulty breathing, so they could regurgitate or choke if not watched at night. Because of the condition of her hands, Aaliya cannot prop herself up on her bed.

There are physical barriers. Because of the condition of her hands, she is unable to break her fall. She needs help going up and climbing down steps.
And although most Apert’s children can speak, Aaliya hasn’t developed language and speech. Her voice is a soft, pleasant babble and she communicates with her hands and expressions.

“It is quite nerve-wracking and heartbreaking when you cannot understand what your child is saying to you,” says Rabia.

As if the physical challenge was not daunting enough, Rabia also battled public judgment. One local doctor was particularly dismissive about improving Aaliya’s condition early on in her journey.

“‘Oh just give her love and affection,’ he said. Of course I was giving her that. But I wanted to do everything in my power to give her the best.”

It was decided: Rabia was going to embrace her challenges.

“Being ridiculed gave me strength,” she says. The stares didn’t discourage her either. “It’s really liberating when you stop thinking about what others think about you,” she adds with a smile.”
So how does this mother — whose daughter’s extra need requires every morsel of her energy — find this incredible willpower to soldier on? And how does little Aaliya get by?

Rabia goes back to the watershed moment on the day of birth.

Her husband’s words are etched in her mind. “Our child was born with Apert’s syndrome. It was visibly apparent. And he said to me: ‘We will tell it like it is’.” It was the push she needed.

Rabia began to talk about Aaliya.

“We broke the taboo… the stigma of ‘log kya kahengay?’.”

“Being ridiculed gave me strength. It’s really liberating when you stop thinking about what others think about you”

Rabia faced her challenge with a nearly 800-word post on Facebook about Aaliya’s syndrome. “I felt this sharp pain in my chest as if someone had slipped my heart through a paper shredder,” she wrote, describing the emotional upheaval.

She addressed her visceral insecurities. “I remember nursing you [Aaliya] in the NICU and thinking why her? Why my baby? I prayed to God to fix you in whatever way possible, to make you like me. I was afraid for selfish reasons and mostly because I was afraid of the challenge.”

She drew strength from her daughter and her writing became a means of catharsis.

“Aaliya you are only two months old and you have already taught me so many things. Compassion, selfless love and an amazing will.

“You have taught me to keep digging and researching for more resources. You have shown me that no struggle is meaningless. You have given me purpose and made me more resilient.”

It was an emotional, soul-baring admission. And it met with a magical response. Hundreds of likes, comments and messages flooded Rabia’s timeline.

The support – both online and from family at home – motivated Rabia to share more. Soon, she was blogging about Aaliya’s journey. She shared photos before and after Aaliya’s first major surgery – an hours long procedure where doctors worked on her to have fingers and toes – and people cheered for the little warrior.

There were more photos, of her miraculous recovery, happy mall visits, Halloween costumes and other milestone moments in a child’s life.

Rabia talked about Aaliya candidly, and welcomed her friends into her daughter’s special world. In one early update, she wrote: “My fingerless, fearless beauty is a dynamic personality indeed.”

The posts became viral. “In Karachi people got to know there is a girl named Aaliya who had this syndrome. Before she stepped out, they knew there was a child who does not have fingers.”

“At first sight they are hesitant… scared. [They wonder] what’s going on with her hands, her head and her eyes.”

“But when they see her smile, they instantly go ‘aww!’.”

She calls Aaliya’s wide, heartening smile the ‘Pacman smile’. It reflects her amazing aura.

“Whether she’s in pain, or has been slapped by another child at school, the very next moment she has a big smile on her face.”

“It makes me feel so small in terms of my problems. Her smile is my inspiration. She is a love magnet.”
Research and writing became Rabia’s goals, and she now reaches out to other patients living with Apert’s syndrome in Pakistan.

“I have connected with people in Karachi, Lahore and Multan so far,” she says.

Last year, she launched ‘Special Needs Pakistan’, an online forum on Facebook which has become a platform for parents to indulge in a cathartic soul searching.

“Should siblings bear the responsibility of being care takers of their siblings with extra needs?” Rabia asks the nearly 2,000 members in one post. Parents with varied experiences weighed in.

The opinion was strictly divided for and against sibling caretakers. But despite the polarity of the debate, members at the end comforted each other — after all, they face the same challenge.

Before this, Rabia had big plans of launching a business. But Aaliya changed that. She transformed Rabia’s life.

“She is an amazing child – a godsend. She made me a more compassionate person. She changed my outlook towards life… it is not a rat race. It is not a competition. We live in such an artificial world that we forget about the beauty of simple things.

Aaliya’s curly mane is crowned with matching blue clips – an ode to her favourite Elsa outfit
Aaliya’s curly mane is crowned with matching blue clips – an ode to her favourite Elsa outfit
It has been three years since that first declaration on Facebook, and Rabia continues to lead the race for Aaliya as her biggest cheerleader.

Fortunately, after surgeries conducted in the US, Aaliya now has fingers and is able to hold things. “She can drink her milk on her own. If I put a bite on a fork she can put it in her mouth. She can scribble on the whiteboard, too! After 1.5 years of physiotherapy, she started to walk one day.”

She works incredibly hard with her daughter – a perfect mother-daughter symbiosis.

“The goal is to make her independent. We don’t want her to ask anyone for help; it pains me when she is reaching out to a total stranger to help climb a step. I hope that with the confidence I am working to instill in her, she will be able to get by.”

In many ways, three-year-old Aaliya is an ordinary toddler. She enjoys dressing up as the hysterically popular Princess Elsa from Frozen and will be spotted in the characteristic blue dress if you happen to visit on a regular day. She loves Bollywood music, and dancing in front of the TV as it booms is an undisputed favourite pastime.

And even though Aaliya lives with a challenge that has ordained for her to be an unwitting fighter from the day of her birth, with the unflinching support of her mother — her flag-bearer — at three feet, she stands tall.