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.

Sundus, on fighting for Fatima’s chance to hear

Doctors said Fatima would never speak, but her mother changed that

A family photo of Sundus, Hamza and Fatima
A family photo of Sundus, Hamza and Fatima

A week after Fatima Raza’s first birthday, her parents discovered she was deaf.

Before that day, they did not have the slightest inkling that she had what doctors say is ‘profound deafness’.

“She was doing baby talk and engaging with toys that have musical sounds like regular kids,” says her mother Sundus Munir.

What they didn’t realise at the time, however, was that Fatima was responding to the visual element of toys – a bright light or eye-catching image – and had no reception of sound at all.

Sundus had her tested.

“The hearing evaluation [brainstem-evoked response audiometry] – revealed that Fatima could not hear anything. So if she stood next to a jet engine, maybe she would hear something very faint,” says Sundus.

The revelation shattered the family. Plunged deep in denial, they went for a second test that confirmed their fears: Fatima was born deaf.

Sundus describes the harrowing course of coming-to-terms with the predicament. “I was unable to speak from shock,” she says.

“I could not even say the word ‘deaf’ when I spoke about Fatima till last year. But one must accept it. You have to use the word and come to terms with it. If I can’t accept that she is deaf, how can she be okay with it?”

Her mind was clouded with dreary thoughts of her daughter’s future: was she ever going to attend a regular school? Would she enjoy going to birthday parties? Would she make friends? What if she got bullied?

“I could not even say the word ‘deaf’ when I spoke about Fatima till last year,” she says. “But one must accept it. You have to use the word and come to terms with it. If I can’t accept that she is deaf, how can she be okay with it?”

In the face of a tremendous test of strength, Sundus made a silent vow to fight back.

Fatima at play.
Fatima at play.

The lack of accessible support groups or guidance did not deter her; she rejected a doctor’s theory that Fatima would never be able to speak and immediately launched into researching options.

“We could have spent £40,000 to figure out why this happened to us, but we opted to invest in the path ahead,” she says.

Sundus and her husband decided to get Fatima a cochlear implant, a device that does the work of the damaged part of the ear by providing sound signals to the brain.

“We could have had the surgery in the US or India, but we didn’t want to run back and forth between countries in case something happened. We opted to have it done here [Pakistan] by Dr Sohail Awan who has a 98% success rate with 600 of these surgeries,” Sundus explains.

She describes the moment Fatima heard sound for the first time. “It was very emotional for all of us. The doctor turned on the implant and knocked on the table… Fatima reacted. She started to cry. We were all crying.”

From relying solely on sign language and being unable to talk, three years after her procedure Fatima is able to speak and hear mechanical sound. She has overcome the initial unwillingness to wear the device for very long and now takes it off only to charge it while she sleeps at night.

“She is hearing just fine,” Sundus beams. “My deaf daughter can now sing nursery rhymes. She can say full sentences.”

“She is a very stubborn child. It works for her because she is a fighter. Whatever situation you put her in, she accepts it slowly but eventually she gets there."

Although her speech isn’t very clear, Sundus says it is work in progress. Fatima is a fantastic lip reader, and her mother jokes that she may have a promising career as an FBI agent.

“We all ask, ‘why us?’ But things like this teach us to be compassionate and strong. Why not us?”

As the mother of a daughter who was born with a disability, Sundus understands that parents go through a negative phase. “You cry in your own time. But then you need to stop feeling sorry for yourself. You need to help your child.”

Sundus’ current battle is to fight for educational inclusion for Fatima, as several schools are reluctant to take on hearing-impaired students.

But even with her sight set on that daunting challenge, Sundus works hard with Fatima’s speech and confidence to give her the best shot at competing with other children her age.

Ameera's hero

Mehrnaz says loving a special child is an unparalleled feeling

Four-year-old Ameera likes music. Mehrnaz knows this; when someone sings to her daughter or plays a musical toy, she can tell Ameera is enjoying it.

“Any song at all,” Mehrnaz says, “She listens intently. She listens like she can understand everything.”

Ameera and Mehrnaz
Ameera and Mehrnaz

When her son plays in the garden, Ameera sits in her wheelchair and watches. She cannot actively participate in anything that requires moving on her own.

“I feel she is imprisoned all day,” Mehrnaz says. When she takes her daughter outside, people look at her like she is a prisoner.

But Mehrnaz doesn’t feel that Ameera’s disability is something to be ashamed of or embarrassed about.

“We shouldn’t hide our children; it’s not their fault. God made them this way and hiding doesn’t help,” she says firmly.

In 2012, when Mehrnaz rushed to the hospital with Ameera— a year and a half old at the time— she was worried, yes, but she didn't think it was anything huge. Ameera had contracted fever and was unwell, but things had just started going wrong. She had a seizure and grew worse; one thing was lead to another.

A week after she fell sick, doctors realised that their initial diagnosis was incorrect. Ameera was rushed to a different hospital, where the root of her illness was instantly detected: her brain was completely damaged.

Mehrnaz remembers being in a state of shock. “I started banging my head against the wall,” she says. “Imagine just sitting there, and suddenly your child gets fever, then she has a seizure… I lost my wits.”

What hit her most was how her normal, functioning daughter had suddenly lost everything. Only a few days before, Ameera had been walking and crawling like any other healthy child. Now, she could no longer move her foot. Mehrnaz could remember her daughter's words and laughters from the previous year, but in its place now were only sounds.

“The shock remains, of course, and it did for months,” Mehrnaz continues her story. “But slowly, as humans, we can adjust to anything.” She realised she would have to keep fighting, and she did. “I had to do whatever I could for her.”

Moving continents

While her husband stayed behind in Karachi, Mehrnaz moved to London the same month with Ameera and her son, who was four years old at the time. Life in London was by no means easy, but it was easier. Mehrnaz had sidewalks, wheelchair ramps on public vehicles, and wide open spaces where she could take her daughter openly and comfortably. At the very least, she could now take her daughter outside.

“I was content that whatever was happening was happening for a reason… for my children," she recalls. For the next year and a half, her days were dedicated only to Ameera’s well-being. She put off her career in medicine to take care of her; nothing else mattered.

Ameera, meanwhile, was getting the best treatment possible: she started intense physiotherapy and speech therapy under the care of doctors Mehrnaz trusted.

Ameera getting physiotherapy in England at the Bobath Center
Ameera getting physiotherapy in England at the Bobath Center

Everything was planned for them under England's free healthcare system: the hospital sent reminders for upcoming appointments and medicine replacements, doctors and nurses were accessible, unlike in Karachi, and Mehrnaz had constant access to resources advising her on Ameera's upbringing; what therapist to go to, what school to enroll her into.

Thrice a week, a nurse visited their home to check up on Ameera and her equipment, and to give Mehrnaz a break for five hours. For those five hours, Mehrnaz was free to do her own things, to pause for a while.

Everyday fears

Mehrnaz moved back to Karachi in January last year. Unlike in London, here, there is no moment she can rest. Ameera has improved with time, but she is still completely disabled. She needs assistance to eat, to walk and to move around. Merhnaz has hired a full-time nurse to help out; Ameera has to be fed through a tube, and has medications specified for different times of the day.

Ameera on her standing board
Ameera on her standing board

Everyday tasks are challenges. There are only a few doctors in the city, and it is a nightmare to coordinate with their packed schedules. In addition to her feeding tube, Ameera needs a special wheelchair, a special bathtub and a standing board.

Mehrnaz brought all her equipment from London, but when something breaks down or needs a new part, she does not know what to do.

The one time Ameera’s feeder tube broke down, Mehrnaz panicked because no doctors or medics knew how to fixed it. She rushed Ameera from one hospital to another; she called up doctors ten times, even twenty times. She even tried to change the tube herself. Finally, she finally found one doctor who agreed to help her figure it out; the rest told her they had never handled such equipment before.

Mehrnaz keeps telling her husband they should move back to London, even if for a little while. It isn’t that Ameera has regressed in Karachi, but the amount of attention and precision required in taking care of her is not made easier by the lack of professionals and resources. “My heart fears for her,” Mehrnaz says.

Learning through love

The difficulty of raising a “normal” child is a task on its own, Mehrnaz feels. Any-four-year-old’s energy is enough to tire a parent out, but here is a special child who is dependent upon her parent for everything. Mehrnaz knows her son can take care of himself, but Ameera's case is entirely different.

“That kind of love can’t be described,” Mehrnaz reflects. “It cannot be experienced with normal children.”

That doesn’t mean she loves her son any less—but the love she feels for Ameera is layered with more. For one, she has realised over the years that she will do anything for her daughter. “I have also realised I am much stronger than I was,” Mehrnaz says. “I have learnt about my own strengths. I have learnt how deep love can be.”

She draws her strength from her commitment to her child. “Yes, I have support from my family, from my husband, from the nurse… but at the end of the day I have to do everything alone.” Even then, Mehrnaz realises she is one of the lucky ones. “Think about all those people who don’t have money and facilities,” she says. “Think about all the other mothers going through these challenges every day.”

Meet Mo's supermom

Huma Durrani says she has accepted her son's autism and learned to look at the glass half full

Mo and Huma
Mo and Huma

I remember saying the following sentence very soon after my son was diagnosed with autism:

"I have accepted that Moeez is autistic and I am going to deal with it to the best of my ability".

I was proud of myself for not being in denial even for a short while and wasting no time in strategising and implementing a therapeutic course for my son. Thus, as far the word 'acceptance' in its generic connotations is understood, I had aced the act!

I think that most parents of special needs children will agree that the path of raising their special children is often strewn with extreme emotions.

There is celebration on the one end of the emotional spectrum and heartache on the other.

With stereotypical children this upheaval is not so emphatic, at least that is how I have experienced it. For instance, where my other two (stereotypical) boys are concerned, I am not easily distressed by the ups and downs in their lives just as I am not overly exuberant of their success.

Therefore, it is not hard for me to accept that Murad, who is a very talented sportsman, has not excelled in any sport due to his lack of passion and neither am I heartbroken that Mikail plays no sports at all considering both my husband and I are quite sporty and very fitness conscious.

Am I an awful mother?

I don't think so.

It's just that the challenges that I have faced with Mo have turned me into a 'chilled out mom' as far as my other children.

Anyway going back to 'acceptance', as the years flew by I realised that the act of 'acceptance' in the context of Mo's lifelong challenges was a recurrent theme in my life which replayed every now and then following the latter's developmental trajectory.

As Mo grew in years following an uneven path of successes and setbacks, I constantly had to toggle the barometer of 'acceptance' with relation to him.

Along my journey with Mo I had to 'accept' that:

  • Mainstream school for Mo was not a suitable option anymore and that he would have to go to a special school.

  • He would probably stimm through his life and standout in public as odd while doing so.

  • That Mo would have to opt for a life skills path and not go down the academic route.

  • That he would never be able to lead a fully independent life

  • That Mo would probably never have a friend in the true sense of the word.

  • That he would not grow taller than his 5ft height no matter how many stones I turned. So on and so forth.

Thus, whereas during the very first few weeks of Mo's diagnosis, I was convinced that I had dealt with 'accepting' autism, it kept on piling new challenges on me through the ensuing years to date -- challenges whose reality I had to learn to accept.

'Acceptance' has definitely become easier with time but I know now that it is a continuous process and not a one-time thing. This is just the nature of the unpredictability of autism.

‘What did I do to deserve this child?’

I often ask myself, “What did I do to deserve Mo? Why me? Why?”

Now before you jump to conclusions about my questions and just in case you are thinking, “How can she talk like that about her son, what a #@*%^%$#”, please bite your tongue. Now read the questions again, this time with positive connotations and then proceed to read my answer below:

"I don’t know what I did to deserve Mo. What I do know is that God really loves me for He gave Mo to me"

Still the skeptics amongst you may continue to think “Oh, she is just saying it to fool herself. After all what is the blessing in having a special needs child, a child who will never outgrow his autism, perhaps never be able to live independently? Surely she is still in denial, tsk, tsk”!

Dear skeptics, below are just a few reasons why I am so blessed to be Mo’s mother and I want to talk about them because sometimes, like today, I have this overwhelming need to share my gratitude with others. Hence, the following:

Blessing 1

Through Mo I have learned to look at the glass as half full rather than half empty; to be grateful for the blessings that but for him I probably would have taken for granted such as: the act of spontaneous breathing, deep and unhindered; the ability to tie my shoe laces without thinking; the ease with which I read, write and remember things; the way I can tell instinctively what the other person is thinking or feeling and so much more.

Mo playing cricket
Mo playing cricket

Blessing 2

Because of Mo I continue to experience immense joy in the simplest of things such as: a song sung completely off key, a joke repeated a dozen times with recurrent delight, a cricket ball pitched straight at the batsman, a word used for the first time in a sentence and much much more.

Blessing 3

Thanks to Mo every time I come across someone with a disability or a difference I feel love and respect, a warmth that comes from a vicarious connection that transcends ordinary bonds.

Blessing 4

By means of Mo I have found the purpose of my life through my work. He has taught me how to give without asking, be patient in adversity, believe in miracles and persevere tirelessly.

So when the question that I asked at the beginning begs for attention I simply repeat the answer that makes the most sense to me “God loves me for He gave me Mo”!

This post originally appeared on Huma Durrani’s blog and has been reproduced with permission. To read Huma’s story, grab a copy of her book Wrapped in Blue.

Raising Amaan, then saying goodbye

After her son’s passing, Saira says she holds onto their beautiful memories

When we contacted Saira Mobin earlier this year, it had just been over a month since the death of her son, Amaan. But despite the anguish of dealing with the loss of her 13-year-old, who fought a long battle with several genetic diseases, Amaan’s mother said she was ready to talk about him.

Amaan was born with mitochondrial disease
Amaan was born with mitochondrial disease

“I can always talk about him," she says. "It is never a bad time."

Amaan was born with mitochondrial disease, a rare genetic disorder which opened up a world of difficulties for him and his parents since the day of his birth. Throughout his brief life, he battled a poorly functioning liver, muscle weakness and neurological problems. His illness required immense patience and strength; but the daunting challenge did not keep him from living life fully, or from spreading his characteristic, unbreakable, positive aura.

“I don't really remember any day when he was sad,” his mother recalls. “He was a bubbly child. He'd find happiness in almost anything.”

Saira too has experienced the shared trajectory of mothers who have children with special needs: denial, anger, frustration. “It is not jadoo. It is not our ‘fault’,” she emphasies, dismissing societal misconceptions that attempt to “explain” why a child is born with special needs.

“Parents go through a denial and depression phase," she reasons. "The tears are never ending. But if you give up, your child will suffer.”

Amaan's life taught her something else: people never realise they are gifted with inner strength, until they are hit themselves. "I discovered my power last year," Saira says. "But I never really thought it was extraordinary. I just knew I had to, After all, I am the mom.”

There are some things a mother with a special needs child may have to give up. With a daughter (Aimen) who is now 20 years old, and Amaan, a child with special needs, Saira had her hands full. “I worked as a dress designer for a few years after Amaan was born but couldn't keep up with it as his needs were growing,” she says.

“I also worked for a short while teaching children with special needs but had to quit again because of Amaan.”

But she refocused her energy on Amaan and worked hard with her son. He was enrolled at Bayview High School where he studied for seven years. At home, his mother surrounded him with things that made him happy.

“He could sing and was very fond of music– he knew at least 300 Bollywood songs by heart,” Saira says.

The months after his death have been hard for Saira, but she says he is always with her
The months after his death have been hard for Saira, but she says he is always with her

Before the fatal seizures occured, Saira says Amaan would constantly have his headphones plugged in, listening to music. "It helped him tame his hyperactivity.”

In August 2014, things took a turn for the worse. Amaan developed rare epilepsy which was unresponsive to any drug. The seizures were no longer controllable. "It was between Amaan and God," Saira says.

His condition deteriorated rapidly over the next few months, and on December 10 last year, Amaan passed away. The months since have been difficult for Saira—as they would be for any parent—but she comforts herself in the knowledge that he will always be with her.

“I miss him so very much." Saira says. "But his deep, unconditional love will help me survive this."

She cries and grieves, but Amaan has also left her with plenty of memories to smile about.

“I have a treasure trove of fond memories; his naughtiness and silliness that made me laugh out loud so many a times...they keep me going.”

Project director: Atika Rehman

Reporting: Atika Rehman, Sadia Khatri

Video production: Kamran Nafees, Sadia Khatri

Development: Aleem Bawany, Nauman Junaid

Design: Ema Anis, Jahanzaib Haque

Comments (126) Closed
Usman Arif
Apr 04, 2016 01:15pm
Quite a brave mother with big heart.
Recommend 0
Apr 04, 2016 01:19pm
Great moment for parents when they there hard work on their children bring changes on them. These children are defying all odds.
Recommend 0
Apr 04, 2016 01:22pm
Good bless you all !!!!
Recommend 0
a son
Apr 04, 2016 01:26pm
After seeing children's innocent and smiling faces and the responsibilities of brave mothers, I have tears in my eyes. Their contribution is immense and only mothers can do this, that is why the mother's respect and position in Islam is great.
Recommend 0
Ahmed Wm
Apr 04, 2016 01:27pm
Well done DAWN. Very encouraging article. Well wishes for all in suffering.
Recommend 0
Shafaq Hussain
Apr 04, 2016 01:29pm
you will find a replacement for anything in the world except mothers. If you are mother is alive , You are having your blessing with you . Once they will be no more then you have to find your blessings in the graveyard. I Love you Mom
Recommend 0
Ashraf P
Apr 04, 2016 01:31pm
These are the REAL human beings. The rest just make up the numbers.
Recommend 0
Apr 04, 2016 01:40pm
Brave mother keep it up you will win Inshahallah...Nearing one's lifestyle to God and helping others with similar problems is a very strong tested remedy for these tests in life .
Recommend 0
Apr 04, 2016 01:43pm
My solute to all these beautiful people, the children and their parents. You really show what life is all about.
Recommend 0
Farhat Mehboob
Apr 04, 2016 02:00pm
Great article - any child is a gift and one that is special is a more beautiful one - they give us that special looking glass to see the true beauty of life and the human spirit which is stronger than we know - brave mothers and brave children , may they always be blessed
Recommend 0
Fazli Azeem
Apr 04, 2016 02:03pm
Thank you all for doing what you do. We are all in this together... we are all advocates for people with differences. Inclusion leads to change and extraordinary growth for society.
Recommend 0
Apr 04, 2016 02:05pm
Beautiful Dawn, just so inspiring. It is every to-be mother's biggest fear to have a child that is not 'normal'... but these mothers make it seem so easy
Recommend 0
Laila Q
Apr 04, 2016 02:29pm
This is just wonderful. Thanks DAWN
Recommend 0
Apr 04, 2016 02:40pm
God bless you, all the brave mothers, who defy odds everyday... Sitting at my desk, this piece made me cry. Inspirational and moving! Respect and God bless.
Recommend 0
Apr 04, 2016 02:48pm
Amazing families and amazing children! Dawn this is such a positive post, loved it! Stay Blessed everyone!
Recommend 0
Apr 04, 2016 02:53pm
Thank you for posting this. As a mother, my heart felt a multitude of emotions. All the mothers who narrated their tales are warrior queens.
Recommend 0
Apr 04, 2016 03:04pm
Respect ....from India
Recommend 0
Apr 04, 2016 03:16pm
Brave mothers....I can surely relate myself with all the mothers out their since my daughter was born with CHD...I spent most of the time in Hospitals...she had breathing and feeding princess passed away after open heart by pass surgery....she is with me...and will be forever...only a mother can feel this... My salute to all those mothers....God bless you.
Recommend 0
Apr 04, 2016 03:18pm
One of the best articles i have ever read. Salute to all parents who are facing this predicament. You have proved that it takes action, preparation and planning rather than waiting, wondering or wishing, to accomplish anything in life.
Recommend 0
Apr 04, 2016 04:05pm
Thankyou for doing this, for writing this for thinking to write on the topic. God bless all parents and children going through life's journey via a different, difficult for some reasons specifically chosen for them path. I hope and pray there is reason for that, it means something in the end.
Recommend 0
Abid zaman khan
Apr 04, 2016 04:14pm
we have been thru all this as my eldest son who is now thirty years has autism.
Recommend 0
Apr 04, 2016 04:19pm
you guys are what truly defines Pakistan, stay happy and blessed :)
Recommend 0
Apr 04, 2016 04:27pm
A women became superwomen after became mother.
Recommend 0
Apr 04, 2016 04:42pm
Hatts off for such a unique reporting and raising an issue which been considered taboo in our society. The ppl or kids who can be deaf, blind, handicapped etc are the people to be respected more then bullaying . I knw how the deaf or people wt hearing problems try to cover their AID n public Cz they don't want to be self pitied or to be answered of so many useless question of which they don't hv answers. All my sympathies respect n lov fr the heroic moms whose stories o read above ... Fr they are fighting the battle of thier kids equally as thier kids themselves fighting on.
Recommend 0
Apr 04, 2016 05:13pm
Great effort of putting these inspirational stories of hard working mothers and their family.
Recommend 0
Sensible Indian
Apr 04, 2016 05:22pm
you are beautiful person ! hats off to you !
Recommend 0
Syed Muhummad Asim
Apr 04, 2016 05:39pm
Very encouraging and eye opening article. Good Job Dawn!
Recommend 0
Apr 04, 2016 06:02pm
Great job guys !
Recommend 0
Apr 04, 2016 06:07pm
one canot deny the love these mothers gave to their children, i salute these brave mothers and their families. there are thousands POOR mothers who gave also gave their everything and raised their children ad well. please acknowledge their bravery and love for their kids. poverty multiply the misery they are in.
Recommend 0
Ashim Halder
Apr 04, 2016 06:36pm
Excellent mind blowing article
Recommend 0
An autism mom
Apr 04, 2016 06:55pm
DAWN, Kudos to you for highlighting the struggles and triumphs of these lovely kids and their incredible parents. A paradigm shift is very much in order regarding how children with special needs are seen in our culture/society. Thank you for getting that ball rolling.
Recommend 0
Apr 04, 2016 06:57pm
Hats off to these mothers !
Recommend 0
Apr 04, 2016 07:18pm
Highest respects for these brave parents.
Recommend 0
Apr 04, 2016 07:21pm
We have such incredible, strong women in our country who play all their roles with immense courage and strength. Being a mother to special children is a challenge that they accepted and handled positively. So encouraging also to see a newspaper like Dawn taking up such projects- this should go a long way towards ridding us all of societal stigma and misconceptions.
Recommend 0
Apr 04, 2016 07:23pm
It is a heart-wrenching story of mother's sacrifices. That is why mother is the other name of sacrifice. But, it is very important to find real reasons behind such abnormalities. I have my relative in London who gave birth to two sons 5 years apart, both with genetic abnormalities of very serious nature. Doctors have told them to accept them as they are with no hope. But, they discovered that, being first cousins, the parents had got their genetic discrepancies mutated and magnified in their children. They added that, according to scientific analysis, more than 70% first cousin marriages are bound to have some abnormalities in their children. The family is devastated despite having the world's best heath-care facilities and counselling.
Recommend 0
azeem haidar
Apr 04, 2016 07:31pm
Love you Maa........!
Recommend 0
Apr 04, 2016 07:41pm
No words to say Great Mother! and thank you. You remind us that we always should seek for mery of God and you will get highest reward from God for keeping up with life.
Recommend 0
Apr 04, 2016 07:44pm
Salute to these mothers for their unlimited dedication, love, and strength! Best wishes and I really hope and pray that these children will become independent individuals who can support themselves in the society. We must note though that all of these are affluent families. Edhi centers provide help to disabled children from poor families. The author is requested to also cover those efforts.
Recommend 0
Apr 04, 2016 07:54pm
respect and salute to these brave parents frm india
Recommend 0
SA Chandio
Apr 04, 2016 07:56pm
You are a blessed family.
Recommend 0
Apr 04, 2016 08:04pm
Wonderful and thankyou for writing this.i know exactly how all these super moms feel being the mother of a special needs child looking for a good school for her,need help in this regard.she's a rett child.
Recommend 0
Apr 04, 2016 08:16pm
Great article.
Recommend 0
Apr 04, 2016 08:28pm
Salam to all the brave mothers..
Recommend 0
Apr 04, 2016 08:31pm
Inspiring AND motivational article that reposes faith humanity and motherhood....
Recommend 0
Apr 04, 2016 08:33pm
Motivational inspiring and reposes faith in humanity.
Recommend 0
Apr 04, 2016 08:46pm
We can see that God gives unlimited courage to the parents with these children. I hope DAWN would also conduct a report on the efforts at Edhi centers and hospitals in Karachi and Lahore that provide free of charge care and support for disabled children, so that middle class families can benefit from it. This is a great, inspiring article!
Recommend 0
Apr 04, 2016 08:54pm
Beautiful children and amazing moms! We would love to hear the Dads and siblings thoughts as well! Stay blessed! May your positive attitude conquer all difficulties!
Recommend 0
Apr 04, 2016 09:08pm
Amazing mom's and awesome dad's who support them. Educating everyone about how to be positive in life especially when things don't go as we expected. Salute to their courage and strength.
Recommend 0
Ali Hashmi
Apr 04, 2016 09:28pm
Hat's off to all moms.
Recommend 0
Hamid Hussain
Apr 04, 2016 10:30pm
Mothers are made in heaven and came from heaven! I bow to those mothers who have invested their lives in their special kids and God knows all about what you have done and what you have been doing for your children!
Recommend 0
Bin Ismail
Apr 04, 2016 10:51pm
ALL children are special.
Recommend 0
Apr 04, 2016 11:17pm
heart touching and relate-able...I had a sister who was special who passed away, therefore I understand the sentiments being spoken about here. Most importantly this article has helped understand my mother's courage better...thank you
Recommend 0
Pireha Hamad
Apr 04, 2016 11:35pm
I am in tears right now... All of you are ao brave, tested on every step of life and yet you are happy and grateful... I am so so impressed by you all... May all you who have special needs children have strength and all the happiness of life...
Recommend 0
Apr 04, 2016 11:53pm
Most of the examples you have given here are of affluent mothers. I know of a many mothers who have special kids but no means or support. I cannot even begin to tell U how heart rending and painful life is for one such mother.
Recommend 0
Apr 04, 2016 11:54pm
This is just wonderful. Thanks DAWN
Recommend 0
Apr 04, 2016 11:59pm
excellent and touching article. May God bless these mothers.
Recommend 0
Dr. Aman
Apr 05, 2016 12:07am
Can't find word to express my feeling for this great mother. Big solute to the brave lady of the world.
Recommend 0
Apr 05, 2016 12:47am
The bravest mothers on earth. Also, please take out time to reflect on the brave fathers. I am a stay home dad and can relate so very well. Mothers are given the highest respect in Hindus and Sikhs, also Islam as commented below. Great Work!!
Recommend 0
Iram Masud
Apr 05, 2016 12:56am
Salute to these mothers! This is true pure and real love that we can never find anywhere in anyone but in mothers! May God bless all these mothers who are real Heros raising their kids with such dedication and with so positive perception towards life.
Recommend 0
Syed Amin
Apr 05, 2016 01:34am
Great story of hard work of a mother. We salute our mothers who has suffered lot of pain for us. I knew very well what my mother has gone through and my appreciation for this brave and Courageous mother.
Recommend 0
Apr 05, 2016 01:41am
wow I have not cried in a looooong time, I don't know whether these are tears of pride/joy or overwhelming sadness. I admire and respect these wonderful courageous moms. Reminded me of my mom --- There is absolutely no one who can love you more than your mom. Love em back !
Recommend 0
Apr 05, 2016 01:56am
for the first time ever an article that made me cry i salute the brave parents and the beautiful kids god bless you all xx
Recommend 0
Fazal Karim
Apr 05, 2016 02:22am
God could not be everywhere and therefore he made mothers
Recommend 0
Apr 05, 2016 02:52am
I guess these must all be very brave single mothers, because the word "Father" does not appear once on this page at the writing of this comment including the comments.
Recommend 0
Apr 05, 2016 03:13am
Incredible journeys. Great reporting. I work with people with physical and mental exceptionalities in Canada where we have lots of facilities and tools to work with. I hope the government in Pakistan comes up with more facilities for special needs. As a community, we should discourage putting labels and instead go for inclusion. Let us also be part of their world instead of simply trying to make them part of our's. Empathy should be part of a school subject, and social work volunteer hours a pre-condition for graduation. Again, great reporting. A big thank you to the families for sharing their stories and giving us energy. Best wishes on your way!
Recommend 0
Noorulain Ali
Apr 05, 2016 03:21am
I don't have words to praise these parents enough!
Recommend 0
Apr 05, 2016 04:48am
Heroines and heroes.
Recommend 0
Apr 05, 2016 05:44am
God bless you all; I'm from India based in Singapore. raising a kid with special needs.
Recommend 0
A. Khan
Apr 05, 2016 06:50am
Great to hear of these families dealing with their children's special needs instead of hiding them away. I would like to point out one point that can be misunderstood by anyone reading this article making them hop on a plane to the UK. "everything was planned for them under England's free healthcare system". Yes, the NHS is free but only for British citizens and EU nationals. All others have to pay for their treatment. Its not clear from the article whether the parents are UK citizens or not.
Recommend 0
A. Khan
Apr 05, 2016 06:54am
@M.Saeed : Unfortunately, what you state about marriage between cousins resulting in genetic mutations in the offspring, has been noted in the UK and that is why the government has introduced blood tests prior to issuing visas in case of spousal sponsorship. It is a shocking fact that the majority of children at the special needs schools/hospitals are of Asian mainly Pakistani origin. Given that Pakistanis or Pakistani origin people represent less than 1% of UK's population, the fact that they are producing majority of the disabled children is something that should not be ignored by people, inclined to inter-marry within their families. You cannot get more compelling evidence that this practice should be discontinued regardless of religious or social permissibility.
Recommend 0
Najma Hisham
Apr 05, 2016 07:13am
I have so much respect for the Parents and so much love for their kids.
Recommend 0
Apr 05, 2016 07:35am
Hats off to them!
Recommend 0
Apr 05, 2016 08:15am
Heart touching
Recommend 0
Ali Hasan
Apr 05, 2016 09:20am
truly incredible, these folks are real life heroes. God bless you all!
Recommend 0
Apr 05, 2016 09:28am
This is beautiful!
Recommend 0
Apr 05, 2016 09:32am
Simply speechless. Salute to these brave mothers! You rock.
Recommend 0
Apr 05, 2016 10:16am
hats off to these brave mothers. Thank you Dawn for bringing such people and stories to us. Keep up the good work.
Recommend 0
Apr 05, 2016 12:33pm
This article made me realise again things I take for granted. I feel deep respect for all of the mothers and their children, for showing such strength and rising above all odds.
Recommend 0
Apr 05, 2016 12:40pm
_hats off to these mothers and the whole family .
Recommend 0
Apr 05, 2016 01:46pm
What amazing stories of children who have to deal with so many challenges and their immensely brave mothers. It was bittersweet to hear their stories - how much they and their beloved children have gone through and continue to do so. But more so in a country like Pakistan, where there are so many social stigmas, hats off to these brave women who shared their stories.
Recommend 0
Apr 05, 2016 02:00pm
I can relate to many of the feelings and moments being a mother of special needs child , and its no less than a blessing as upbringing such kids make you understand the meaning of life , brings you near to your origin.
Recommend 0
Apr 05, 2016 03:43pm
Love conquers everything. Respect and admiration to these mothers. As a younger brother of a special needs brother I can relate to all this very well. My mother gave up lot of things she liked in her younger years just to make sure that my brother did what he liked. She is like a rock when it comes to making sure that we are a cohesive family . We are three brothers and at the table every one has a vote. God bless all mothers out there, kudos to Dawn for printing this.
Recommend 0
Apr 05, 2016 04:52pm
Recommend 0
Apr 05, 2016 07:16pm
Great effort by DAWN, appreciate if you can also cover Pakistanis who doesn't have resources to cope up with this challenge for people awareness and to help them in the shape of setting up institutions who can assist them
Recommend 0
Ranjana Surplis
Apr 05, 2016 07:46pm
what a beautiful article. Beautiful mothers of beautiful children from the heavens they are created.these beautiful Angels
Recommend 0
mrs aftab
Apr 05, 2016 08:11pm
Its really hard to raise a child with any impairment but God gives those parents courage. All parents you have mentioned here seem to belong upper class who could afford all types of facilities. Kindly mention those parents who are doing this mighy task with meager resources. Please, they are fight on dual fronts.
Recommend 0
Denise Hashim
Apr 05, 2016 09:01pm
As a therapist I have often seen enormous strength and perseverance in parents of special needs children. Nothing is as powerful as parental love. With it you can move mountains. With public awareness others will take up your fight and help move those mountains with you. God bless you all.
Recommend 0
Apr 05, 2016 09:07pm
Hats of to all these mothers. You guys deserve the "hero award " or Sharmeen Obaid Chinoy should make a documentary on those parents who have courage to do things against our system.
Recommend 0
Azhar jamil
Apr 05, 2016 09:40pm
Salute to these great mothers. 'Tis really a hope for Pakistan. Thankyou Dawn for publishing these interesting courageous stories for the readers.
Recommend 0
Adnan Faizi
Apr 05, 2016 10:07pm
Angels from heaven. At first you worry what would happen to them if you left, how would they live without you. Then you come to realize how would you live without them?
Recommend 0
Apr 05, 2016 11:15pm
Thanks to all for sharing these amazing stories.
Recommend 0
Sandeysa aya hai
Apr 05, 2016 11:19pm
Love you all... I am your family too. having a special needs child has opened doors of wisdom and acceptance for all, unconditionally. this is what they teach us. unconditional love and no greed. happiness for all. no grudges, no evil mandate.
Recommend 0
Apr 05, 2016 11:27pm
Having a child with genetic disorder turns your life upside down and it requires a hell of courage to bounce back and face the bitter truth for the betterment of the child. I have a 2 years son who has Hemophilia - a genetic disorder in which the blood doesn't clot on its own. Its been four months since he was admitted in NICU and for the non stop bleeding from his mouth for two weeks. I had to stand by his bed soaked in his blood. I was once a hard hearted man that never cried, not on my dad' death but those two weeks in the hospital shattered me to the core. Now, I even cried on reading the stories of these courageous women. But there's always a hope and thanks to the wonderful scientists who are working on gene therapies these days. Hopefully, one day our coming generation would not have to go through the same heartwrenching moments of thier lives. All these little cuties with abnormal conditions need intensive care and love. God bless them.
Recommend 0
Apr 06, 2016 01:02am
Asalmalikum, I am mother of special child and can imagine myself in all these mothers who have shared their inner self . My prayers are for all those children who have special needs . My request is we as mothers are as strong as iron so we should get our special child rigths in all fields especially education with dignity and no one should show pity . Jazakillah
Recommend 0
Apr 06, 2016 03:50am
I think this article truly speaks to the challenges special needs children and their families face, and how rewarding it can be when they have even small successes. My only critique is that it seems to highlight educated parents who are determined and have the financial means to help their child. These are very honest and touching personal stories, but they point to a significant worldwide need to help these children and provide families with resources, even those who do not have the means to find it themselves.
Recommend 0
Tanzeela Afzal
Apr 06, 2016 12:32pm
Tears rolling down my cheeks.Brave mothers of Pakistan never let the hardships rule over them.Respect and salutes!!
Recommend 0
Tanzeela Afzal
Apr 06, 2016 12:33pm
DAWN always comes up with inspiring stuff (y)
Recommend 0
Apr 06, 2016 01:08pm
God bless you :)/
Recommend 0
Apr 06, 2016 01:31pm
Courageous all... The article made my eyes wet.... Very strong personalities of moms & their children ....
Recommend 0
Apr 06, 2016 05:22pm
Recommend 0
Apr 06, 2016 05:37pm
These mothers/parents are real Heros in every sense of the word. May God give them strength to endure and make the most of their childrens lives. As a reader, I am lost for words. As a society we need to do more. As an individual I need to more. Even if it's small act of kindness such as smiling, we need to start somewhere. God bless these true Heros.
Recommend 0
Farhan Tahir
Apr 06, 2016 08:43pm
I have a 16 year old daughter who has Autism. She is very special and she has given meaning and purpose to our lives. These kids with special needs are indeed special. They are pure and sin free and how fortunate we are to serve this community who have the highest status in the eyes of God Almighty.
Recommend 0
Ozair Akhtar
Apr 07, 2016 03:02pm
I Love You
Recommend 0
Hameed Dhirani
Apr 07, 2016 06:49pm
its a very gloomy dull morning in Toronto, came to my office thinking about targets, sales and dollars and other, opens the website and read this article OMG I had Goosebumps, them tears flowed !!! What other people face we have no clue BUT stories like this do inspire us all heads off All Mothers ( they are built differently !) amazing article keep up the great work ! closing point what about people who can not go abroad for treatment ! God Bless Well done Dawn !
Recommend 0
Apr 07, 2016 08:20pm
One should always be grateful to the Almighty for all his bounties, sometime difficult challenges in life reveal the real humanity and love in us.
Recommend 0
May 08, 2016 06:26pm
Respect!! I am bowing to all these great moms..
Recommend 0
May 08, 2016 08:03pm
Such are persons that society should rock -like support. It may rekindle hope in otherwise decadent crowds that abounds country. Hope it reaches to maximum people who may take initiative to take care of special people.
Recommend 0
May 08, 2016 08:44pm
Recommend 0
May 08, 2016 10:22pm
Great story. You have done an awesome job of paying tribute to parenthood. Congrats!!
Recommend 0
May 09, 2016 10:58am
Beautifully written article about these amazing women and lovely children. I'm sure other members of the family (especially fathers) do their fair share, but these women are inspirational. I hope I can get some of their strength and energy.
Recommend 0
Asim Irshad
May 12, 2016 03:28pm
It's very brave thing to do in Pakistan. But we have to agree that their is a lot to do for children with SEN. Developed countries are having a lot of support for such children with different conditions. The basic problem in Pakistan is that people call these type of conditions a "disease" which is completely unacceptable. Don't forget all those famous well known people specially researchers including scientists had such conditions.
Recommend 0
Asim Irshad
May 12, 2016 03:30pm
@Asim Shame you think they not normal..They just have developmental delay plus they need to have right medication which helps them to control their condition..
Recommend 0
May 19, 2016 02:13pm
When we sit in our livingrooms and talk about the shallowness of the world and it's people, you will come across reading about people who are not in many numbers but do exist: such beautiful people on one page. God bless you and your lovely and innocent kids. And may all children who need extra care are blessed with great parents like you.
Recommend 0
May 21, 2016 03:47am
Truly touching! Well done Dawn to bring these stories to readers which deal with humility and humanity. So much in life we take for granted including normalcy
Recommend 0
May 24, 2016 01:08am
Great mothers!!
Recommend 0
Noor ul Arifeen
May 24, 2016 12:57pm
Great mother
Recommend 0
May 28, 2016 12:59am
Be strong. We salute your courage.
Recommend 0
Marium S
May 30, 2016 02:29pm
Dear dawn, While it is commendable that these mothers with special children are being focused on and I do not in any manner wish to detract from the stellar way they are raising their special needs children, it would be nice if you also focused on mothers from the middle class coping with special needs children who cannot afford moving to the first world and have access to such resources. The middle class and lower middle faces similar struggles, which deserve more recognition than the glorified elite we appear in awe of.
Recommend 0
Akhtar Aleem Syed
Jun 06, 2016 11:34pm
Mothers raising special kids are no ordinary mothers.
Recommend 0
Saulat Haider
Jun 08, 2016 02:18am
I worked with people with special needs. Developmental disabilities are various kinds. Down syndrome is more common. Some children with autism could perform so many things. Their behavior and language is very repetitive but they do their jobs excellently. One of my client who is now adult worked in a hotel restaurant preparing salad and doing dishes. He does his job so beautifully that a normal person could not do like him. He is a little slow when doing his job but he is perfect. When he cleans bathroom it may take over an hour but bathroom is always shining after when he finished his job. His employer loves him. He is very productive to the community.
Recommend 0
Jun 12, 2016 12:40am
Brave and great families . Salams to all of them.
Recommend 0
Muhammad Qureshi
Jun 16, 2016 06:59pm
A father of a special need child living in USA, I salute all parents with special need children in Pakistan and all over....your life is not normal like others and i share the pain when we see other children, but it is an extremely proud feeling when our special children smile back at us. God sure plays a different ball game when it comes to this and one will never understand why he would, but have faith people!!!
Recommend 0
Jun 18, 2016 10:25am
After a particularly bad day at work I read this. We all need perspective in life and need to count our blessings. I for one will take inspiration from these mothers and stop whining for I have much to be thankful for. We don't need to look any further than these mothers for role models.
Recommend 0
Aleem Khan
Jun 22, 2016 01:28pm
Quiet Brave Mom's..with the great patience taking care of their kids at this stage specially..Hats Off to All Mom's
Recommend 0
Jun 25, 2016 01:22am
Mom, your position is great.
Recommend 0
Jun 25, 2016 09:35am
Great Mothers, salute to them. God will give the strength. Mothers only have such strength for their children. Once again Salute to them. DK PAMNANI
Recommend 0