Run by our own Sassy Mama Dani, the incredible charity ZB Foundation provides families in Pakistan with access to New Born Screening heel-prick tests to help detect early inborne diseases and help save countless babies. Rooted in a heartbreaking story about Dani’s daughter and the charity’s namesake Zahra Beau Naqvi, the ZB Foundation is proof that great beauty and strength can arise from the darkest of tragedies.
How Did the ZB Foundation Start?
Zahra Beau Naqvi, born on October 8th, 2011, was a peaceful baby girl. Born in one of the poorest regions of Northern Pakistan, a third world country going though deep political and social turmoil, ZB’s birth mother was forced to abandon the baby girl at birth under pressure from her conservative family.
My husband and I adopted Zahra after vowing throughout our marriage to give abandoned baby girls from Pakistan another chance, however we didn’t know she held onto a very difficult and painful secret. She left behind her seemingly lost cause of a life as an abandoned girl in a third world country and we offered greater hope, love and compassion.
But that fairytale was cut short immediately, as ZB was revealed to have been born with a metabolic disease (Glutaric Academia Type 2) that would come rushing back to claim her life. In just four short months, after having overcome so many obstacles to just find love, ZB’s final battle to beat a disease that occurred 1 in 250,000 babies did not end like a fairytale.
Zahra Beau Naqvi died on February 18th, 2012, leaving us as well as our family and friends in shock. This baby girl, one who had so much passion and fight to live, one who had so many odds stacked against her, fought for 16 days in ICU till the bitter end. Betrayed by her body, she willed herself to live, to beat a disease that would have been curable had it been detected at her birth. She never gave up and so we never gave up, until time eventually ran out on the fight.
ZB may have lived and beaten her ultimate obstacle if her doctors had been able to perform just one simple ‘heel-prick’ test known as “New Born Screening”. This test would have shown enough red flags to warrant further investigation, which most likely would have led to the discovery of the metabolic disorder.
From this painful experience comes the birth of the ZB Foundation, set up by us in her memory and spirit – designed to give other babies the chance that Zahra never got herself.
What is the charity’s goal?
Based in Pakistan, the ZB Foundation’s immediate aim is to pioneer the use of New Born Screening, which target the uncharted medical area of rare metabolic diseases. Over time, we also want to become leading soldiers in the fight against baby/infant deaths and third world standard pediatric medicine and healthcare facilities.
By collaborating with clinics and hospitals as well as a comprehensive network of labs and doctors, we hope that parents in developing countries will finally have the opportunity to provide their babies with a heel prick test (New Born Screening Test). It’s taken for granted in the West, but it’s one that ends up saving countless lives due to early detection of in-borne diseases. This simple test is not available in Pakistan, so we aim to pioneer and provide this test free of cost – all in the name of Zahra Beau – The ZB Foundation.
Where in Pakistan are you based and focusing on?
We are currently based in Islamabad, so we’re focusing on this area and Northern Pakistan. Our initial infrastructure comprising labs, machines and participating doctors will be established in this particular area, but then it’ll expand all over the country. We are also waiting for the Shaukat Khanum Memorial Cancer Hospital & Research Centre to open in Peshawar next year, as we’ll have our own unit within the hospital which will carry out the heel-prick tests. I’m excited to see Zahra’s name above the door.
What’s your inspiration?
Zahra is our inspiration as she is making this charity come to life. We’ve met so many amazing people who happen to have the unique experience which we are looking for – people you can’t just meet everyday. I believe she’s making this happen. We’re lucky to have one of the pioneers of new born screening in Europe on our advisory board, along with one of the only genetic specialists within Pakistan. My in-laws who live in Pakistan help drive the charity and without them we would be struggling to operate at all.
We hear you have a growing family – tell us about it!
Yes, we have been blessed with three more children since we lost Zahra. Amara is our eldest at 3 years and we have 2 year old twins, Rio and Sienna. Our house is like a playground yet every day is so much fun! I think we may have one more but we’ll have to see….
We’re so grateful for the support we’ve received since starting this journey. We’d also like to thank Baby Souk who donate AED 5 from every online order.
Thank you for sharing your story with us Dani, you’re an absolute inspiration and we’re privileged to be able to share your story. If you’d like to donate to The ZB Foundation and help Dani on her journey, please head over to their website here for all the information.