‘Either Allah cures them or takes them back’

Tabassum and Mohammed Nazir tell Irena Akbar why they want mercy killing for their six children, suffering from a rare neurological disorder

Written by Irena Akbar | Updated: June 1, 2015 2:40 pm
Neurological disorder, Mercy killing, Tabassum, Mohammed Nazir, Panjak Kumar, Agra DM , neurological disorder deaths, nation news, india news, indian Express Nazir and Tabassum with their six ailing children. “I want to die. I have no energy left in me,” she says. (Source: Express photo by Renuka Puri)

Tabassum, 36, mother

It’s mid-afternoon and I am almost dead. My 18-year-old son, Sulem, needs to pee, but can’t take off his trousers. As I help him, I look away from his private parts. I have no choice… or else, he’ll soil his trousers and I will have to clean the bed.

My other son, Suheb (16), also needs me just then. He is hungry, but can’t eat on his own. Thankfully, my mother-in-law is here to help. She feeds him milk mixed with biscuits. He can’t eat solids and is served soft diet, mostly khichdi. His daadi loves him a lot and as he lies in bed, she wipes the drool off his mouth.

Asim (14) and Kashif (12) meanwhile, have been crawling around naked for the last 15 minutes. I had taken off their clothes to give them a bath when Sulem had called out to pee. My sister-in-law has come over and is looking after my eight year-old son Awan and his twin sister Taiba, both of whom too can’t do anything by themselves.

Two journalists have suddenly walked in and want to take a photograph of the six children. I need to assemble them on the bed so  that they fit into the frame. I lift them like boxes onto the bed. They are quite heavy but I oblige the journalists since the children are excited and happy. Sulem and Suheb are already lying on the bed as they do all day. The children look straight into the camera and can’t stop smiling. I finally get a chance to drink a glass of water.

This has been my life for 14 years. Not a moment of rest or sound sleep. I spend my nights half-awake, just in case my children need me. They suffer from a brain disease, the name of which I don’t know, and as they grow older, they get disabled. Suheb and Sulem are bed-ridden, Asim and Kashif can’t walk, and Awan and Taiba are headed there.

I want to die. I have no energy left in me. I am 36 years old and I don’t think I’ll live beyond 40 or 50. The children are getting heavier and I am getting weaker. I lift them, but they slip off my hands and hurt themselves, and then I cry. I have a thyroid problem too. After I die, who will take care of the children?

My husband has written a letter to powerful people in the country, asking them for mercy killing of the children.

I am a mother. How can I even say or think that I want my children to die? But I am helpless and endorse my husband’s plea. I have given up my life for my kids. I don’t go out anywhere. I have not been to a social function, be it a wedding, death, or birth, in years. I did not even attend my siblings’ weddings.

I have no grand dreams for my children. All I want is that they lead normal lives like other children — go to school, eat and drink on their own, play, go to work.

My children are beautiful, they have lovely green-blue eyes. They are also intelligent. They know what’s happening around them. Thankfully, my two other children (eldest son Khubeb, 20, and youngest daughter, Ulfat, 5) are fine.

My six children were normal when I was pregnant with them. They were fine when they were born too. But they began falling ill when they turned 4 or 5. A doctor in Delhi said our children had this condition because my husband and I are cousins. But I don’t believe her. My brother is married to his cousin but their children are normal.

Honestly, I don’t expect those powerful people to reply to my husband’s letter.

But if Allah changes their hearts, they might come to our aid. If they do, I will give them my dua.

Mohammed Nazir, 42, father

I work at a halwai shop for Rs 250 a day. In the last 15 years, I have spent Rs 4-5 lakh on the treatment of my six children. Some doctors say they suffer from cerebral palsy, others call it something else. Some say they will live till 18, others say 30. Some say it’s curable, others say it’s not.

The fact is I don’t have the means to take care of them anymore. Currently, I have enough money to pay for the physiotherapy of only two of my children — Asim and Kashif. Thankfully, the therapist has waived off the fees for Kashif. Sulem and Suheb have become bekaar now, and Awan and Taiba, both 8, are showing signs of the same disease.

I wrote a letter on May 22 to the District Magistrate of Agra, the President, the Prime Minister and the UP Chief Minister, asking them to either sanction the mercy killing of my children or take responsibility for their treatment.

Mercy killing is wrong and I don’t want to be pushed into doing something like that. I just want the government to help me. I hope some farishta (angel) puts an end to our predicament. A week ago, some NGO-wale came from Mumbai and said they would take the children away. They asked for their medical reports, and promised to get back.

I have a supportive family — my parents, siblings, my in-laws are always around the house to help us. But I feel the most for my children’s mother who spends every waking moment of her life taking care of them. We both got married in 1995. Our first son, Khubeb, is fine. He studied till Class VII and works at the shop with me.

After Khubeb, we wanted a daughter. But she delivered a son, Sulem. The ultrasound showed his head was big and the doctors said the delivery would be difficult. But all went fine. We even put Sulem in a school. Then, one day, his teacher complained that Sulem had been crying all day at school. He was 4 or 5 then. He came back from school, felt giddy and collapsed on the floor.

We rushed him to hospital where they did an MRI and advised us to take him to AIIMS in Delhi. The doctor in Delhi only spoke in English and that too mostly to her colleagues. She kept asking me who was married to whom in our khaandaan. She finally blamed the problem on the fact that my children’s mother and I are cousins.

We kept trying for a daughter. But she gave birth only to sons, one after another. They were all born normal, but by the time they turned 4 or 5, they stopped walking, by 8-10, they stopped crawling, and by 15-16, they became bedridden.

Some years ago, an Agra MLA arranged for treatment at a government hospital. But the doctors were insensitive and the treatment was stopped midway. We have never begged anyone for help.

I wonder whether Allah has punished us for some sin of ours, or has sent us to earth to serve these six lovely, helpless children.

Finally, after so many years of trying for a daughter, we have been blessed with Ulfat, who is now 5. I am hoping she doesn’t develop the same disease as my five other children. I am somehow convinced she won’t. I am also hopeful that something will turn around for my children. I sincerely hope that either Allah cures them, or calls them back.

(Agra DM Panjak Kumar confirmed to The Sunday Express that he had got the letter from Nazir and was “examining it”.)

Those who want to help the family can contact Mohammed Nazir on his number: +91-8979466055, or visit his home at House no. 6/106, Bada Ghalibpura, Agra

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  1. B
    Buhaha
    Apr 16, 2017 at 3:00 pm
    This man Mohammed r (the FATHER of these UNFORTUNATE CHILDREN) deserves NO SYMPATHY; he is an utterly irresponsible man who just wants to lay the blame on some one else (such as god, doctors, fate, sins, and so on). If he truly cared, he would stopped having children. Now in 2017, he is MAKING MATTERS WORSE: according to a news item in the newspaper The Hindu, he has got his eldest son Khubeb betrothed to Khubeb's cousin who is a known carrier of the disease. That means r feels it is alright to have a new child (i.e., his potential g child) doomed to suffer from this terrible health problem. www.thehindu /opinion/op-ed/the-interpretation-of-a-malady/article18027504.ece According to this DISGRACE OF A HUMAN BEING R, to be sick or healthy, is “the will of Allah”.
    Reply
    1. B
      Buhaha
      Apr 16, 2017 at 2:58 pm
      This man Mohammed r (the FATHER of these UNFORTUNATE CHILDREN) deserves NO SYMPATHY; he is an utterly irresponsible man who just wants to lay the blame on some one else (such as god, doctors, fate, sins, and so on). If he truly cared, he would stopped having children. Now in 2017, he is MAKING MATTERS WORSE: according to a news item in the newspaper The Hindu, he has got his eldest son Khubeb betrothed to Khubeb's cousin who is a known carrier of the disease. That means r feels it is alright to have a new child (i.e., his potential g child) doomed to suffer from this terrible health problem. : www.thehindu /opinion/op-ed/the-interpretation-of-a-malady/article18027504.ece According to this DISGRACE OF A HUMAN BEING R, to be sick or healthy, is “the will of Allah”.
      Reply
      1. K
        kartik iyer
        May 31, 2015 at 12:56 pm
        Couldn't the s simply adopt a girl child after 2 abnormal kids? I mean, if they're "trying for a girl child", would they continue to do so even if she would have delivered 20 kids with cerebral palsy or whichever unfortunate disease the poor kids have? How did the parents expect to raise 8 kids with a wage of 250/- per day? Did the government ask them to reproduce so many times? So why are they expecting the govt. to help? #HumDoHumareDo?!!
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          Anser AziM
          Jun 1, 2015 at 2:15 pm
          If it is DMD, genetic counseling is a priority to avoid future problems in the family. In this case mother is the carrier and the affected are the sons who have inherited the mothers X chromosome. As I read in the article the family has a healthy male child who can marry as he has luckily inherited the good X either from the father or the mother and he will live a healthy reproductive life. However, the girl may be a a symptomatic carrier and she requires genetic counseling. If she happens to be a carrier her male child may have DMD from a would be healthy father....my two cents
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          1. T
            Tamanna khan
            May 31, 2015 at 10:18 am
            #IndianExpress can u give us their details like address , phone number or account nimber, I hope u have , Plz share it. Thanks
            Reply
            1. H
              hayatlives
              May 31, 2015 at 12:34 pm
              ya sure..just ignore them... anyway they are muslims and not our problem..right Lovely??
              Reply
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                Imran
                Jun 1, 2015 at 6:49 pm
                Please see the Father contact no in the end
                Reply
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                  Zara
                  May 31, 2015 at 10:41 am
                  Genetic defects. Hw cruel
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                    noor
                    Jun 1, 2015 at 2:30 am
                    Would like to know how cn i reach them or help them financially.
                    Reply
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                      ALI
                      May 31, 2015 at 11:34 am
                      My son also like these childrens and for your kind information I'm not marry in blood relation it's a ill or bad luck
                      Reply
                      1. A
                        amin
                        May 31, 2015 at 12:47 pm
                        Hi my name is dr Ameen iqbal M Occupational Therapy I Can Help Plz Gimme There No. And Address.i wanna Help
                        Reply
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                          anilbaghmar
                          May 31, 2015 at 8:43 pm
                          It is very painful to read plight of the family & pray good 4r them. One thing i noticed community came 4wd to help financially & expecting help 4m govt. please 4r nation sake educated ppl should stop following more possible children, i have many friends 4m this community who r educated having 4-5 children. According 2 me this anti national.when u r not following rules it is unfair to seek benifit
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                            anilbaghmar
                            Jun 1, 2015 at 6:06 am
                            W world knows how follower of ur religion shows mercy on human being,I request u 2 watch news of Islamic nations, soon u realize how PIECEFUL Islam is.
                            Reply
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                              Anil Kumar
                              Jun 1, 2015 at 5:01 am
                              it is very difficult to convince and educate people that consanguinous marriage is the root cause. once this couple came to know about this medical problem in there first and second issue either they did not consult doctor or no body suggested them that they should not procreate more
                              Reply
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                                Anil Kumar
                                Jun 1, 2015 at 5:10 am
                                no no your religion has no provision of mercy for nonmuslims. i worked and served muslims as doctor for twelve years. i know the physics and chemistry of this community in depth. ms noor should disclose whether she is sunni or shia? what is your feelings for each other? How sympathetic/empathetic are you for Ahmadias,Ismailes,Bahais, what to ask for Hindus,Christians?
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                                  Anup Morrgan
                                  Jun 2, 2015 at 6:04 pm
                                  Nothing like that. It's not about a particular religion. In south- cousins are married off as well. Scientifically its dangerous for the child but with medical science developing, people have ped that stage already. It is about the mentality which says a SON is needed at all cost and we will keep reproducing until we get it. If got, then a girl is needed in case the SON grew up and became remote controlled by another girl(Read Wife) and abandoned us so we will have our own Girl who would remote control another Son(Read Husband) from a different parent and she will not abandon us. This is never ending cycle in India.
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                                    Anup Morrgan
                                    May 31, 2015 at 5:11 pm
                                    Call me insensitive but this is stupidity. Some parents in the want of a Son never stops reproducing, some like this in the want of a daughter AFTER A SON OBVIOUSLY did this. After the first case itself or may be 2nd they should have stopped right after instead of leaving it up all on Allah. They have knowingly put the daughter in the risk now. If she got the same, who would take care of her? It is 10 times more tougher to take care of a girl in such condition than a boy. And worst was they want to Mercy Kill?
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                                      Arshad Husain
                                      May 31, 2015 at 11:42 am
                                      While the world leaders, sing the songs of "economic growth", spend billions of dollars "producing weapon of m destruction", send air crafts under cover of darkness to "bomb sleeping children", "preach about human rights", the poor people of the world continue to suffer... Addressing global Poverty and providing medical facilities for the poor are just slogans to win votes. The common agenda of the politicians all over the world is to: Win elections and remain in power. We humans are the most brutal and vicious of all the animals. As regards to the UN, the organization is JOKE that is not worth a laugh. A request to PM. Modi: You are unlike the other world leader, you are a honorable person, please help this unfortunate family.
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                                        al
                                        May 31, 2015 at 1:19 pm
                                        My dear readers, It is very shameful that some individuals are attacking the family who is already seeking mercy kilkilling.if you cannot help please do not post negative comments, about asking help to allah or any other god, trust me our Indian blood has that ability to help in need. Please send me the address and contact information.
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                                          arulmangai
                                          May 31, 2015 at 9:38 am
                                          we lack collective wisdom.. during the successive child births, the doctors should have been more alert and should have done proper medical examinations. then updated the couple with the information (even if they are ignorant); secondly, the child which cried at school the w day... omg!... i know the school teachers are also morons... they would have just tried to silence or ignore or threaten the child without spending a few minutes with the child for finding out what the problem was... (of course, some parents also do the same at home)... (i think the government should evolve a system to have a para-medic or a well trained child centric nurse who works full time for each school to identify and treat ailments of children)..
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                                            ashkaab
                                            May 31, 2015 at 10:58 am
                                            Plzz share their phone no of every 1 does something for them then their Life will get a little easy at least we can give them some financial aid though that is nothing compared to the pain they are going throughdia express mail me any info.
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