Muscular dystrophy: Genetic disease leaves two siblings wheelchair-bound

Published: December 14, 2012
SHARES
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The children were diagnosed with a rare genetic disorder, a form of muscular dystrophy that weakens muscles and hampers locomotion.

The children were diagnosed with a rare genetic disorder, a form of muscular dystrophy that weakens muscles and hampers locomotion.

LAHORE: 

Theirs was a picture perfect family – three healthy, playful children, headed to a bright future.

But before long, cracks started appearing.

Shahid and Saher Zubair’s eldest daughter, Nida, started complaining of severe abdominal pain at the age of 7. Within days, she had a high fever and chest congestion. After being hospitalised, the fever went away but Nida complained of leg pain, and faced difficulty climbing stairs.

She gradually lost her ability to walk and was confined to a wheelchair.

The horror did not end there. It revisited, a few years later, their son Ahmed.

At the age of 9, he went through a similar episode of high fever and abdominal pain. And like his sister, he was eventually confined to a wheelchair.

The children were diagnosed with a rare genetic disorder, a form of muscular dystrophy that weakens muscles and hampers locomotion. In some cases, it has proven to be life threatening.

Unfortunately for the parents, the third daughter, Eman, appears to be headed in the same direction.

She can move and walk around at present, but faces problems in getting up after sitting, and climbing stairs.

Correct diagnosis

Their father, Shahid, said he faces a double challenge.

“I have been trying to convince not only my kids, that they will be fine, but also the doctors in Pakistan,” he said.

“I have been searching about the treatment on my own, with the help of some friends. Hospitals that treat this disease in the US and UK have informed me that patients can be treated, but have to be diagnosed properly first. There are many sub-types of muscular dystrophy (MD). Doctors in Pakistan are convinced that my children have Duchenne MD, but the Singapore National Sciences Hospital diagnosed them as suffering from ‘some problem similar to limb-girdle MD,’” he added.

Shahid said that trials are underway in the US and UK for the treatment and cure of this disease, but he cannot afford to take his children there.

“Nida, who needs Scoliosis surgery to save her life, can be treated at a cost of $100,000 to $120,000. I am trying to do what I can, but it is impossible for me to raise this amount without the help of the state,” he added.

Government’s assistance

On Shahid’s application, the Punjab government formed a medical board comprising Dr Tipu Sultan, assistant professor of neurology at the Children Hospital, Lahore and Dr Ahsan Mahmood, associate professor of pediatrics medicine.

The board examined the children and said in their report: “MD is a broad diagnosis with a number of subtypes. Precise diagnosis is important only for the parent’s mental satisfaction. This might help in further symptomatic and palliative treatment which reduces morbidity and mortality, but is of no material help to the patients.”

The father is furious

“The comment that precise diagnosis is only for the parents’ mental satisfaction is insulting,” he said.

“These are my children and I cannot see them slipping out of my hands before my eyes. It kills me when they go in extreme depression and ask me who would take care of them if I am not around. Two of them cannot even move without assistance, and Nida needs surgery at the earliest to save her life,” he added.

Signs of hope

While doctors in Pakistan are convinced that there is no treatment for MD, a young boy named Sardar Asim Naseer from Sargodha has undergone treatment abroad.

“Doctors in Pakistan said that I cannot be treated. I couldn’t even move freely a few months ago. Someone then suggested to me a hospital in Lebanon. I was treated over there by a team of doctors led by neurosurgeon Dr Nassim Halim Abi Chahine, and now I have recovered to the point that I can drive a car on my own, and move without anyone’s assistance,” Naseer told The Express Tribune.

A senior doctor who constituted the medical board, on condition of anonymity, said there is no policy under which the children could be sent abroad for diagnosis.

“If hospitals abroad write to us that there are 80 to 90% chances that the children will recover, we may send them abroad then,” he said.

Shahid, however, said no hospital in the UK or US could guarantee that the children would recover, without even seeing them.

“I cannot just sit idle so I am fighting against all odds. Maybe this way I can be of some help to those families who have patients suffering from MD amongst them,” he said.

Shahid has a website that discusses, in detail, the children, their history and the disease. The website, www.miracleforthree.com, also has an option to donate for those who want to help the family.

“I am doing all I can to save my children. I am hopeful I will, with the help of people, collect enough money to take them abroad for treatment and keep their dreams alive,” he said.

Published in The Express Tribune, December 14th, 2012.            

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Reader Comments (8)

  • Genehack
    Dec 14, 2012 - 10:43AM

    Were any any other such cases in the parent’s family? Are the Parents first cousin? These points should have been included in the news.

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  • Subhash Rana
    Dec 14, 2012 - 1:02PM

    Hi there is no need to spend $100000 on Scoliosis surgery in USA as you can do it in any big hospital in India for $8000 approx. you can request your government for Indian visa. And for muscular dystrophy there is no treatment today and the doctors who says there is a treatment are cheating innocent patients. you can read more about it on muscular dystrophy association USA website. Best is to wait till real treatment comes in USA

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  • Farrah Muldoon
    Dec 14, 2012 - 11:31PM

    THERE IS NO TREATMENT FOR MUSCULAR DYSTROPHY – FACT.

    It is very saddening to read this misinformed article. The writer appears to have narrated the family’s story without researching anything about the underlying condition.

    Please visit the MDA website at http://www.mda.org if you are interested in learning the facts about these conditions.

    If you (like me) have a family member with any the dystrophies (including SMA, FA, CMT, ALS), please educate yourselves about the illness and then seek appropriate care and therapies to manage life with the condition.

    Ignorance is not an answer.Recommend

  • Dec 27, 2012 - 3:53PM

    @Farrah Muldoon: Dear Farah, thanks a lot for your comments, but keep in your mind that the author wrote this article on the information provided by me (the father of kids suffering with muscular dystrophy). We are since last 8 years are intouch with 85 muscular dystrophy associations, and with thousands of various researches going on worldwide to find any thing for our kids. Unfortunately your information are just based on website of these associations, while we are practically facing situation on daily bases. The latest development with all proves and three families got treatment abroad with similar problem and got benefitted (all are available in Pakistan.
    Thanks for your information’s, muscular dystrophy have twelve major and 1196 subtypes of hypertrophies. Most of the time the bearer him/herself overcome the problem. While lot of other molecular therapies based on exact subtypes of diagnosis help to improve the quality of life of kids. With due respect 99% of Pakistani neurologists don’t take pain to go for investigation, only based of physical symptoms or initial wrong diagnosis, destroy the patient life.
    If you need complete details please feel free to contact us at 03008424479

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  • Dec 27, 2012 - 3:58PM

    @Genehack: Yes we are first cousin, still the sequence of genetical transmission don’t fit in our case as we have no such history. More over its observed as mutation in genes due to unknown reasons. In Pakistan 50% marriages are cousin marriages, and disability ratio is 0.5%, while in west 100% non cousin marriages and this problem ratio is among each 3000 children one suffer with genetical disorder (information by Muscular Dystrophy Associations)
    So could we rule out Cousin marriage as a reason?

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  • Dec 27, 2012 - 4:05PM

    @Subhash Rana:
    Thanks Subhash, we have Mr Sardar and three other cases, who was refereed by Indian Stem cells Centers to Dr Abi Chahin at Lebanon and to some Chinese stem cell treatment center. All these patients in Pakistan got significant improvement. You could visit them and call them if want satisfaction. As Cancer, TB and many other non treatable diseases are now treatable, same muscular dystrophy is also going to be treatable and atleast treatment to improve the dying patients conditions is 100% available,

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  • Jan 2, 2013 - 7:33AM

    Dear all bloggers and dear Mr. Shahid, while Googling my name some minutes ago I touched the article at this respectful journal… and after repetitive read of the content I would very like to interfere a little bit to clarify important ideas.

    First of all I am so happy to hear good news about my patients all around the globe and thanks to the new fast media tools we can better communicate.
    I’m convinced that Muscular Dystrophies in particularly those of genetic etiology (not those caused by intoxications for example) are PHENOMENON-SINCE-BIRTH! So “Building” and “Destruction” processes are active since the creation of the muscle itself.

    Once the patient reach an age where “destruction” become MORE accentuated than “building” the disease show up!

    Dissimilarly to Embryonic, Placental and Umbilical Stem Cells; Safe Adult Autologous Stem Cell and their different techniques can undoubtedly stop the prominence of destruction by progenitor_ing effective myocytes and prolonging the plateau period of diseased people.

    In case of this type of diseases like myopathy and other neuro and neuromuscular degenerative disesases, where medicine don’t mention any actual treatment WE SHOULD TRY unless we find a help. As the respectful Sir is calling for help I would like to declare now openly from this site that I’m calling him since the early morning to bring him here to me where I practice, for one full free treatment (and without tax) for the worst of his children. To mention that those 3 similar cases are so strange and abrupt as if they were triggered by an intoxicating starting agent.
    I wish them the best.

    Nassim Abi Chahine

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  • raheel ali
    Jan 2, 2013 - 6:24PM

    We appreciate Dr Chahine as my sister also suffering with muscullar dystrophy, got significant improvement by Stemcell treatment. Dr Chahine is an angel in present world. We believe these three kids will also get benefit from his treatment.May Allah give him success Ameen

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