Shaila Abdullah

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A Family Battling Muscular Dystrophy

July 21, 2014 by Shaila Abdullah

Nidalookingrightbwjpg-3333459_p9There are many nights when Saher Shahid, 42, of Lahore, Pakistan, quietly comes into the rooms of her three children—Nida, 16; Ahmed, 14; and Eman, 9—and looks at them in bewildered silence. No one can tell that a rare and genetic neuromuscular disorder is slowly wasting away her children’s bodies even as they sleep. Then Saher walks out and slowly collapses down on the floor against the door in grief.

“How can something so perfect go so wrong?” Saher wonders. “My three beautiful children were once healthy and full of energy. And now I watch them suffer every day and there is nothing I can do to help them.”

A Great Beginning

Up until nine years ago, Saher and her husband Shahid seemed to have it all. They had a perfect family with two active and bright children, and had just welcomed their third child, unaware of the disease that was present in the DNA of each of their three children.

When Nida, then 7, suddenly developed high fever that would not subside, the Zubairs did not suspect anything out of the ordinary, even when it took five days of intravenous antibiotics in the hospital to bring down Nida’s fever. Back home, the parents noticed that the child seemed a bit unstable going up and down the stairs.

“We took Nida to see a doctor who ordered some tests and a few days later, our whole world came crashing down,” said a distraught Shahid.

Nida was diagnosed with a rare form of muscular dystrophy (MD) characterized by progressive weakness and wasting of muscles. At the age of 9, Nida was paralyzed from waist down and needed a wheelchair to get around.

By that time Ahmad had turned 7 and he started to experience similar symptoms—high fever followed by muscle weakness. Within days, doctors confirmed that he too had the same form of MD. The Zubairs were inconsolable. Their perfect world had suffered the worst imaginable blow.

“Without losing time, we decided to get our youngest daughter Eman tested,” said Shahid, “and the results confirmed what we already knew. All three of our children were carriers of MD.”

Zubairkidsholdinghandsjpg-3333464_p9Looking for Answers

The distraught father took to the web to find some answers. What he discovered shocked and saddened him. There was no known cure for MD. The life expectancy for many of the forms of MD depends on the degree to which the muscles, lungs, and heart are affected. Shahid found clinical studies and drugs that were in trial stages in the U.S. and U.K. but none that he could benefit from, considering his limited financial resources and reach.

Added Stress

An added stress to the Zubair family is the fact that Shahid—the only earning member of the family has been given a month’s notice to find a new job. He is a logistics manager at a local supply chain in Lahore. Even with a degree in MBA, Shahid has been unable to find a high-paying job that can support his family and their unique needs. The funds that are already limited are haunting the Zubairs as the dreaded end of job day approaches. The monthly cost to run the household and manage the children’s health expenses is $600. The health bills add up quickly as the children routinely suffer from respiratory, cardiac, stomach, and pulmonary issues.

“I knocked every door I could from higher up political leaders to specialists to philanthropic organizations,” said Shahid. “No one seems to want to help an individual and are only interested in helping other organizations or charities. My only hope is to have the children admitted to some clinical trial, research study, or gene therapy, specific to their condition in the U.S. or U.K. I can’t sit on the sidelines and watch my children suffer.”

Zubairfamily3bwjpg-3333462_p9
The Daily Struggles

Today Eman is in wheelchair too, while Nida suffers from scoliosis of spine and needs corrective surgery. The family lacks the financial means to pay for the surgery, which can cost upward of $150,000. Nida is also unable to use her arms to eat or drink, while Ahmad’s spine is being compromised as each day passes.

In the midst of it all, you can still catch a glimpse of the children living their childhood—through their interests in internet surfing, playing computer games, reading, teasing each other, and joking around. The parents try to attend to both the children’s intellectual side during the week—a tutor comes a few days a week to teach academics.

“Our children lift our spirits and we cherish them,” said Saher. “Children are God’s gift and we will take care of ours until our dying days.”

The Zubair children depend on the parents for everything—from going to the bathroom to changing positions during day and night to prevent sores. In the morning, Shahid gets up early to attend to the children’s hygiene and sanitary issues and helps them on their wheelchairs before leaving for work.

“I often get calls at work from one or other of my children to come help them sit, stretch, or for other health reasons,” said Shahid. “It breaks my heart. As they grow older and heavier, it’s getting harder and harder for Saher to lift them and attend to their every need.”

Shahid understands that it is hard for others to imagine what his family goes through day to day. He feels reluctant to obligate family members by asking for caregiving respite. “People have their own problems to solve and houses to run,” he explains. “What I tell people is that if they want to experience what my children go through, just sit in a chair for a whole day with your hands tied to your back. That is what my children go through each day.”

Please consider donating to this amazing family by visiting www.miracleforthree.com.

Labels: opinion, writing No Comments

Blog Tour Fifth Stop: Book Connection

March 6, 2009 by Shaila Abdullah

See my guest post at Book Connection as I talk about the impact of 9/11 on the lives of the ordinary Muslims.

There was a time before September 10, 2001, when I could jaywalk down 6th street in downtown Austin and blend in with the locals. I was colorless, stripped of ethnicity, even faceless at times. After all, diversity is what added to the flavor of the city––that and a certain cross dressing gentleman in thongs who once ran for the city mayor.

That was before some of the locals exchanged their world vision glasses with compromised ones and took a serious look around. What they saw terrified them. They were in a minority in their own land with a group of people they knew little or nothing about. It scared them that the color of their skin matched the ones who took the towers down. After all, didn’t all Muslims prostrate in the same manner as the attackers? Did they not worship at mosques as well? Then came the lumping-of-all-potatoes-in-one-sack epiphany. If all Muslims prayed the same way, surely they must share the same ideology as the terrorists. As the overly-corrected vision of the locals turned blurry from the daily input they received from the media and those around them, they learned to live in fear. With every change in color in the national security threat level, their hearts sank even more. Could they trust the friendly Muslim neighbor across the street, the one who greeted them every morning but sported a beard and whose wife wore a headscarf? The day after 9/11, Muslim-Americans woke up to a new America––the one where they were no longer regarded as locals but outsiders and lumped together with the fundamentalists. They struggled to know themselves, only to lose themselves in the interpretation of others.
Read the whole post

Labels: blog tour, opinion, Saffron Dreams No Comments

Pakistani Writing in English Gains Momentum

March 5, 2009 by Shaila Abdullah

There is growing literary landscape of Pakistani Writing in English (PWE) that has found its way into the reader’s hearts. It is the whole idea of literature opening gateways to out-of-reach destinations. Jai Arjun Singh of Business Standard explores the new interest. See below:

Pakistani writing in English is finding new and dynamic ways to chronicle the many different realities of the country.

“Good literature tells you so many things about other lives,” says Nadeem Aslam in his characteristic soft tone. We’re sitting on the lawns of Jaipur’s Diggi Palace, where the annual literature festival is being held, and the eloquent Pakistani author is talking about how his relationship with Latin America began when he read Marquez for the first time — and how “the 400 pages of One Hundred Years of Solitude made me deeply interested in the lives of millions of people in countries I had never visited”

Aslam himself is part of a growing literary landscape —that of Pakistani Writing in English (PWE) — and the idea of literature opening gateways to other worlds and other people (or, equally importantly, showing that the “other” isn’t so unlike us) has become increasingly relevant here. While Pakistani Anglophone writers like Aamer Hussain, Kamila Shamsie, Uzma Aslam Khan and Mohsin Hamid have been around for a while, the publishing world is seeing the advent of exciting new names such as Daniyal Mueenuddin, Mohammed Hanif and Ali Sethi. In different ways, the work of all these writers reveals the heterogeneity of Pakistan, a country that is frequently stereotyped and tarred with a single brush by the international community. It also suggests that literature’s ability to help us understand and empathise is of vital importance at the present moment.
Read the full article.

Labels: opinion, Pakistani Anglophone Writing, Pakistani authors, pakistani writing in english, PAW, PWE 1 Comment

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