Our Story

The Journey

We are Shahid and Saher Tabassam Zubair, residents of Lahore, Pakistan and parents to three amazing children––Nida, Ahmad, and our youngest Eman. 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. There is no known cure at present. Our children were perfectly healthy and bright until they got this disease which causes severe muscular wasting. It has left our children paralyzed from waist down. The smallest of task has become a challenge for these once active and energetic kids.

Zubair Family

Searching for an Accurate Diagnosis

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, the Singapore National Health Sciences Hospital diagnosed them as suffering from “some problem similar to Limb girdle muscular dystrophy.”  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. 

In Pakistan, we were unable to find proper diagnosis, cure, or treatment for our children. We are grateful to Baylor College of Medicine for providing free genetic screening for all three children to find out an accurate diagnosis. The results came in 2014 and the children have been diagnosed with Limb Girdle Muscular Dystrophy, Type 2D (LGMD2D).

Looking Ahead

Gene therapy is a potential treatment option and is in the process of being developed for various muscular dystrophies. The National Institute of Neurological Diseases and Stroke (NINS) features a list of links on its website regarding clinical trials in the United States and worldwide, which can be seen at http://www.ninds.nih.gov/disorders/md/md.htm and http://patientinfo.ninds.nih.gov/DiseaseInfo.aspx?did=352&dlevel=2.

Learn more about the latest research on MD. 

Financial Hardship

We are without a source of income at present owing to the children’s challenges. As such our means are very limited. 

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Shahid and Saher Tabassam Zubair