Name: Danielle Wilson Naqvi
Business: The ZB Foundation , foundation bringing newborn screening to Pakistan
Location: Islamabad, Pakistan
Reason for starting: My husband and I adopted a newborn baby girl from Pakistan (he is Pakistani and I am British). We called her Zahra Beau. She was a beautiful baby with porcelain skin and bright red lips. She was strong and, we thought, healthy. Within 2 months, she started to become sick, and at 3.5 months old she died after being in the ICU for 16 days. She had a rare form of metabolic disease that could have been detected at birth with a simple procedure called New Born Screening. In the West this is mandatory, and the test is either given in the hospital or a midwife will come to your home to administer the blood test.
After she died we decided to honor her life by supporting newborn babies in Pakistan, as we found out that Pakistan is one of the only countries in the world that does not provide New Born Screening at birth — hence, they have a high child mortality rate. The ZB Foundation was born, and we are now the pioneers for newborn screening in Pakistan.
How do you define success? If we save one child alone, we consider that a success!
Biggest Success: When we started researching what we needed in order to set up the charity, our biggest expense was the machine to analysis the babies’ blood. Through research I found out that the machine is designed and manufactured by a multinational company called Perkin Elmer. I contacted them, and the support they showed me was second to none. Their ethos is to save babies’ lives, and Pakistan is one of the only countries that they do not have a presence in. Perkin Elmer provided The ZB Foundation with a machine free of charge and have provided training to my staff, invited us to seminars to meet experts in the field of newborn screening and medicine, and provide us with support as and when we need it.
What is your top challenge and how have you addressed it? One of our biggest challenges so far has been the bureaucracy in Pakistan. To setup a charity and enable the charity to carry out its functions requires passing a lot of red tape, as is the case in most third-world countries. However, we have kept our determination and through consistent effort we have licensed and registered the charity, which will allow us to operate the charity and be able to reach important milestones, such as having one of the first newborn screening machines shipped into Pakistan without any custom duty, as it’s a donation to ZBF. Also educating doctors in Pakistan to provide the free heel-prick test to the new born baby. We are working with hospitals and doctors to help spread the knowledge.
Currently we are operating in Islamabad and will soon have a presence in North Pakistan’s Peshawar. We aim to work in the whole of Pakistan through the clinics we out source for blood sampling. Once we educate more doctors and hospitals, then this service should become a human right with every doctor providing the test.
Who is your most important role model? Bill Gates — he and his wife, through their Bill and Melinda Gates Foundation, have done so much good for levels of healthcare around the world. Their success and ongoing efforts to eradicate diseases and alleviate human suffering amongst the poor is a true inspiration for anyone running their own foundation.
Edited by The Story Exchange
Posted: October 28, 2015