Pakistani father runs Dubai desert in the memory of his daughter to raise ‘awareness’

Seven years ago, Mr. Naqvi lost his adopted daughter Zahra Naqvi to an undetected metabolic disorder.

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newborn screenings

A Pakistani man named Akbar Naqvi ran 200 kilometers through the Al-Qudra desert in Dubai last month to raise awareness about “newborn screenings.” It is a practice of testing babies in their first days of life to identify disorders that can prevent normal development.

Seven years ago, Mr. Naqvi lost his adopted daughter Zahra Naqvi to an undetected metabolic disorder.

Speaking to the international news outlet, Naqvi said, “I ran to raise awareness on the importance of newborn screenings. It is a simple blood test taken from a child’s heel to check for autoimmune disorders.”

He added, “My wife and I realized within Zahra’s first month of life that “something was wrong with our daughter.”

newborn screenings

Initially, doctors were unable to diagnose the disease, but “we then got a test done and found out that Zahra was suffering from a metabolic disorder called glutaric acidemia type 2. The disease went undiagnosed at the time of her birth due to lack of newborn screening test, and by the time we found out, it was too late,” Naqvi said.

A month after Zahra’s passing, the couple adopted another baby girl.

Mr. Naqvi has set up the ZB Foundation in Pakistan that has an agreement with 40 hospitals across the country. The organization has to date conducted over 30,000 free screenings of newborn babies. It is now coordinating with the Pakistani government to make newborn screenings mandatory in the country.

“In Pakistan, the screening test is not compulsory,” Naqvi said, “if the hospital had the facility, Zahra’s disease would have been diagnosed in time.

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