My name is Saher Zubair. My husband Shahid and I live in Pakistan and are parents to three beautiful and amazing children––Nida, 14; Ahmad, 12; and our youngest Eman, 7. Once we too were a happy, content family like most are. Yes, we were not rich but we had good health and love and that was enough, until Muscular Dystrophy (MD) afflicted our three children and took our joy away from us.
MD is a rare genetic disorder that is severely disabling, and sometimes life threatening. Our children were perfectly healthy until they got this disease which causes severe muscular wasting. It has left the two older children––Nida and Ahmad paralyzed from waist down with the youngest headed in the same direction. The smallest of task, even moving, has become a challenge for these once active and energetic kids.
Please watch a video below of our interview with GEO TV in 2010. Although the narration is in Urdu, captions in English are enabled:
As you can tell by the video, we were unable to secure funding in time to take the children to Dallas Children's Hospital for their appointment at the time. The next date assigned to us is October 18, 2012, from Great Ormond Street Hospital (GOSH) in London.
Muscular Dystrophy (MD) has many variations and having an accurate diagnosis is key to managing the disease. (Learn more about types of MD). We have been frustrated with the lack of resources at our disposal.
While the doctors in Pakistan are convinced that the children have Duchenne Muscular Dystrophy (DMD), the Singapore National Health Sciences Hospital diagnosed them as suffering from “some problem similar to Limb girdle muscular dystrophy.” We need a complete and thorough examination of the children to get an accurate diagnosis so that a course of treatment and management can be planned accordingly. The prognosis for Duchenne muscular dystrophy is not good. Affected males with this progressive muscular disease become wheelchair bound before 13 years of age, are ventilator dependent in their late teens to early 20s due to respiratory failure, with death in their late 20s to 30s due to cardiac or pulmonary problems. We refuse to accept that death sentence for our children.
In Pakistan, we have been unable to find proper diagnosis, cure, or treatment for our children. For instance, the diagnostic facility in Pakistan only offers CPK blood test, while CPK MB AND CPK BB are more accurate to classify the nature of NMD. Unfortunately, no lab in Pakistan has this facility. We know that at present time, proper management is the best treatment that is offered for MD that has no known cure. Unfortunately, we don’t even have access to that.
The latest research ongoing in U.K. and U.S.A offers a more thorough diagnosis and trials are underway for treatment and cure. Before a treatment/management plan can be designed for our children, genetic and molecular study to classify the exact type of Muscular Dystrophy needs to be done in U.K. and U.S. We are also interested in participating in research studies and clinical trials that are underway there. We would like to take advantage of the ongoing experimental trials that are proving to improve the quality of life of children like ours through proper management and medical treatment.
The Singapore National Health Sciences Hospital advised us to get molecular genetics testing done from U.K. or U.S. since the children could benefit from latest research studies being conducted there. Learn more about the latest research on MD.
We are a one-income family living in a rental apartment. As such our means are very limited. Our requests to various authorities in Pakistan for financial assistance to take the children abroad for proper diagnosis have not been answered. We also do not receive any medical or financial assistance to take care of the day-to-day treatment and care of the children.
We have now received an appointment letter from Great Ormond Street Hospital (GOSH) in London for October 18, 2012 to take our children there in order to get a detailed genetic consultation, physiotherapy assessment, and to talk about Exon skipping plan based on results of biopsy for genes molecular diagnosis and its management. While there we will be looking into getting Scoliosis surgery for Nida which is very costly (between £100,000-£120,000). We will have to cover the airfare as well as boarding and lodging.
For now, $30,000 will only cover a small portion of the expenses facing these children. We are starting with a humble goal. Please help us meet it.
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Please contact us if you have any information on other ways to help us. We can be reached at firstname.lastname@example.org or call us at 0092-300-8424479.
This is Najia Sheikh.How you and family doing?please let me know about your kids.May Allah give them health ameen
Najia, thanks for wishes, but in worst phase, I lost my job, three of them need lot of care, I appeal to govt for support but zero reply, You are lucky you are in USA, My ids wish to move out of this country, socialy we are zero, finaciay zero, moraly zero, please help us, need ur email please must reply. email@example.com