Published on: 2015-06-01
Written By: Irena Akbar
Tabassum and Mohammed Nazir tell Irena Akbar why they want mercy killing for their six children, suffering from a rare neurological disorder.
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”.)