DUBAI: A Pakistani man has run 200 kilometers through the Al-Qudra desert in Dubai last month to raise awareness about “newborn screenings,” the practice of testing babies in their first days of life for disorders that can hinder normal development.
Seven years ago, Akbar Naqvi lost his adopted daughter Zahra Beau Naqvi to an undetected metabolic disorder. Now the owner of a fintech company in Dubai runs to raise awareness, and funds, for newborn screenings so other parents and children don’t have to go through what his family did.
Last month, the 44-year-old ran 42 hours across Al-Qudra in what he described as “the ultimate test of human endurance.” He slept only two hours and only took very short breaks along the way. His run, on August 28-29, coincided with the beginning of Newborn Screening Awareness Month, internationally observed in September.
“I ran to raise awareness on the importance of newborn screenings,” Naqvi, who set up the ZB Foundation in Islamabad, told Arab News this week.
Newborn screening is a simple blood test taken from the heel of a child to check for autoimmune disorders.
Naqvi and his wife Danielle Wilson Naqvi realized within their daughter’s first month of life that “something was wrong with Zahra,” Naqvi said.
Doctors were initially unable to diagnose the problem but “we then got a test done and found out that Zahra suffered from a metabolic disorder called glutaric acidemia type 2, which went undiagnosed at birth due to lack of newborn screening,” Naqvi said.
“By the time we found out, it was too late.”
A month after Zahra’s passing, the Dubai-based couple received a call from Pakistan that another baby girl needed parents. They adopted her and soon Danielle also gave birth to twins — a boy and a girl.
But Zahra is continuously present in their memory, they said, inspiring them to help other children survive through the foundation set up in her name.
The ZB Foundation has an agreement with 40 hospitals across Pakistan and has to date conducted over 30,000 free screenings of newborn babies, Naqvi said. It is now coordinating with the government of Pakistan to make newborn screenings compulsory nationwide.
“In Pakistan this test is not mandatory,” Naqvi said, “so if the hospital had the capability, and which is every baby’s right, Zahra’s disorder would have been diagnosed in time.”