Zahra Beau Naqvi was born in Pakistan in 2011, and after she was abandoned at birth, my husband Akber and I adopted her,” 39-year-old Danielle Wilson Naqvi tells Bazaar. “We’d been pining for a baby for many years, and were so in love with her. However, our happiness was short-lived when it was revealed that Zahra had Glutaric Academia Type 2, a metabolic disease that would, in just three and a half months from her birth, claim her life on February 18, 2012.” Perhaps most heartbreakingly, Zahra’s death could have been prevented by a simple procedure known as the ‘heel prick’ test or ‘New Born Screening’, “a preventative health check that takes place during the first two days of a baby’slife to discover any evidence of diseases for which principal symptoms may not be apparent.” This screening is available in every country in the world, except Pakistan. “Had Zahra been given this test, enough red flags would have shown up to warrant further investigation, which most likely would have led to the discovery of the disorder in her early days.” Out of Akber and Danielle’s grief, The ZB Foundation was born. “We wanted to give other babies the chance that Zhara never got herself,” she says. The ZB Foundation now works with the Pakistan Institute of Medical Science Hospital in Islamabad to provide these tests, though Danielle admits it’s not without its challenges. “One of the biggest difficulties so far has been the bureaucracy in Pakistan. To set up a charity and enable it to carry out its functions requires passing a lot of red tape. But we’ve remained determined and have been able to register the charity and reach a personal milestone of having one of the first newborn screening machines shipped into Pakistan free from customs duties as it was a donation from Perkin Elmer, one of our partners.” The Foundation also works alongside the doctors and nurses to provide education. “It’s not only the doctors, but the public also that needs to know the importance of these tests,” she says. This month, The ZB Foundation has partnered with four of the region’s home-grown fashion designers – Reema Ameer, Ayah Tabari, Maha Abdul Rasheed and Ayesha Depala – to promote a range of women’s and children’s T-shirts, illustrated by Lebanese graphic designer Dima El Atab, to raise money for the tests.
“Zahra Beau was my daughter Sahar’s first friend,” Reema recalls. “They were born within a few weeks of each other, so Dani and I began the precious journey of motherhood together. The ZB Foundation is a charity closer to my heart than any other. That all of the proceeds from each shirt can pay for one baby to have this vital screening test is incredible, and something that I am honoured to be a part of.” The next step for the Foundation is to have a presence in Northern Pakistan, specifically Peshawar. “The ZB Foundation is a pioneer for newborn screening within Pakistan,” Danielle explains. “Everything we have done and continue to do is in the name of our daughter. She made all of this happen.” — Maddison Glendinning
The T-shirts, which retail for Dhs225 – the price of a newborn screening test – are available online at Babysouk.com and at Boom & Mellow, Bambah Boutique and S*ucette. Visit The ZB Foundation for more information.