Her life is in danger because her jaw has been paralysed and she can’t use her limbs properly any more.
Luckily, help is at hand. The co-chairman of the Pakistan Peoples Party, Bilawal Bhutto Zardari, heard about her on Express News and said that the government would pay for her treatment. It will cost about Rs2,000 to Rs2,500 per month for the rest of her life.
An eight-member team of doctors, headed by the medical superintendent of Chandka hospital, Dr Zulfiqar Sial, visited Kunbi Sandelo village on Sunday and took blood samples from the entire family.
Allah Bachai is the second eldest of eight of Mohammad Ameen Chinjni’s children. The same disease took the life of her 18-year-old brother, Mohammad Rafiq, last year. Chinjni took Rafiq to the Aga Khan Hospital in Karachi and sold all his property, buffaloes and gold to foot the medical bills. “Now my daughter is suffering from the same disease and I don’t have anything to sell in order to pay for her treatment,” Chinjni said.
Allah Bachai has been admitted to Chandka hospital and is being treated under the supervision of the professor of medicine, Dr Hakim Abro. He told The Express Tribune that Allah Bachai was admitted last year and he treated her for two months, but then she did not return for a follow-up.
He explained that this disease is the result of inter-family marriages.
Dr Sial added that in Wilson’s disease the levels of copper in the body increase to the extent that it starts damaging the brain and liver. But it is curable if detected early. Unfortunately, in Allah Bachai’s case, the disease has already progressed to an advanced stage.
Published in The Express Tribune, December 19th, 2011.
COMMENTS (19)
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The inhuman responses to this positive step by Bilawal Zardari menifests the problem that we as a nation cannot and dont want to see any positive thing happening. Why should not government bear costs of a poor family whose one young member has died and another is on the brink of death?? As chairperson of the ruling party, Bilawal has every right to ask his party subordinates, i.e. CM Sindh to spend some money from national exchequer on saving these pracious lives lives. There is actually need for doing more for WD patients in Pakistan to save many a lives from death and disability. Those of us who 'really' pay their taxes will have no objection, I am sure.
Why government has to pay all? Why not Bilawal himself. After all, many rich citizens of Pakistan pay hundreds of thousands of rupees per month for such individuals to hospitals like SIUT and Shaukat Khanam and Edhi then why not co-Chairman?
This is the problem. He finds one example to make him look like a hero. This is good for the girl and her family of course but we all know this wont make any difference in the long run whatsoever for general society. If he was really sincere, he could take some concrete steps for the health care system, like appointing bodies for hospital management and embezzlement watch, cheaper meds, new hospitals etc.
And people are comparing this to shaukat khanum!? We are pathetic and naive indeed if this is all it takes for us to make him a hero, nay to even consider him kind just because of this.
Was an entire article really needed for this. If yes, then how about adding some statistics at the end about general health care, the fate of other such cases and any steps taken to discourage these marriages?
Finally a good step in the right direction is also targeted by the haters. I was waiting for the hatemail to start pouring in. When IK begged the whole world for money, nobody asked him how much is his money in that? Or does he have an actual job even in his life, especially during last two decades? A whole family is dying and any help from any quarter is great help. The nay sayers should start sending money to the family if they do not want the govt to pay a meager 2,500 Rs. We have a proverb in Urdu "na Khuda too de, na main doon."
Bilawal has no official position in the government of Pakistan. Therefore, it is highly inappropriate for him to make this statement on behalf of the government.
@ Mary...I have lived and worked in Pakistan for almost 20yrs, much of that time in remote areas, managing health and education services (I am only latterly a journalist). As you acknowledge yourself the incidence of children born with genetic disorder related to consanguineous marriage is higher in cultures where it is most prevalent (and it is not only in Pakistan). It has also been noted for instance in south Asian communities in UK in the last year, Birmingham I think was where there was a study. There are always going to be genetic disorder, not everything 'goes right' in even the most perfectly matched relationship, and that goes for every race and culture. But where you have a cultural push towards cousin marriage as you do where I live, then over time the gene pool does get shallower and shallower. I have visited placesa (the villages at the foot of the Hispar glacier for instance) where truly appalling things have happened in inbred and isolated communities over only 4 generations. This is a culture with a predisposition to consanguinity at most levels of society. We can but expect a long-term degradation of genetic quality linked to that very fact. Shame? Absolutely none whatsoever. Ignorance? An awareness based on years of fieldwork and the reading of innumerable studies.
i wonder wht makes ppl think that bilawal is not helping ppl with his money.? moreover, in govt hospitals , medical services r free. however, in some cases ,patients have to bear the cost of medicines. furthermore, imran khan's is not running the hospital with his personal income. hospital z funded by the ppl. how can ppl draw the conclusion 4m this report and object to the word ''benevolence''. @ maher ali, same formula can be applied to imran khan. after bilawal took notice of this girls agony , he saved a precious life and thats what matters the most.
@Chris Cork: You show a great degree of ignorance in your post. It is true that the incidence of Wilson disease, and other genetic diseases, is higher in cultures where consanguineous marriages are common. However, there plenty of us in the Western world who suffer from these diseases; we and our spouses are unrelated. Shame on you.
If we see objectively, what Bilawal did was his duty as a co-chairperson of ruling party not any favor, and after all it would be paid from the tax money of the people of Pakistan.
How is this in anyway "Bilawal's Benevolence" when it's the Govt. (read taxpayers) who will be covering the cost of the treatment?
First, its a commendable thing from Bilawal. But he has promised Government of Pakistan would pay, so its not "Bilawal's Benevolence"
In what capacity is Bilawal authorizing government funds to be utilized for any purpose. These are the things that are wrong with the way Pakistan is run!
No respondent thus far seems to have grasped the point at the bottom of the piece. The condition is caused by inter-family marriages. The closer the marriage the higher the risk of a genetic hiccup in any children of the union. The Norwegians were the first to recognise the dangers of this IIRC and banned cousin marriages in the 19th century, long before modern science had pinned this down.
'Ah...but it is our culture. We must do this. It is our way of life'. Fine. Breed yourselves and all the other cousin-marrying cultures into imbecility over coming generations. You think the west and secularism are a threat? They are as nothing compared to the threat, long term and silent but oh so deadly, that this culture presents to itself.
First of - kudos to Bilawal for trying to use his influence in a positive manner. But I fail to understand why this is being headlined as "Bilawal's benevolence". As far as I can figure out, no personal funds were involved.
I wonder if the government would consider helping the many other Wilson disease patients in Pakistan who are also suffering and can't afford treatment. Our organization sends compassionate use medicine to many WD patients there.
Now Bilawal is slowly entering in Pakistani politics with such good work. After he has been recognized for good work in a passage of time, will he do the same thing which other politicians are doing ???
Well done Bilawal
Nice to hear that. Something good from Bilawal, finally.