Ranchi :

It costs over Rs 1.2 crore a year to keep her healthy, a sum her petty plywood trader father in Kantatoli can’t imagine.

Ranchi girl Sadaf Naaz (19), who suffers from Gaucher’s disease that strikes one in 100,000 people, is getting a sponsor for the enzymes she needs six years after her diagnosis.

UK-based Shire Pharmaceuticals Limited has started sponsoring expenses incurred on her enzymes and medicines that will annually cost over USD 200,000 (around Rs 1.2 crore). Sadaf got the first dose at AIIMS, New Delhi, on October 1 and second on October 15. They have called her again after a fortnight.

Like any rare disease, Gaucher can fox experts. It occurs when a lipid, glucosylceramide, accumulates in the bone marrow, lungs, spleen, liver and sometimes the brain.

In layman terms, it means Sadaf has lived with liver malfunction for as long as she can recall. Gaucher’s disease also causes patients to bruise and break bones very easily. Lungs don’t function well, too.

Sadaf was diagnosed with Gaucher’s disease at Christian Medical College (CMC) in Vellore in 2008. Before this, she underwent a liver operation at AIIMS, but her disease was undetected. That wasn’t surprising, considering that the genetic enzyme disorder occurs mostly among Jewish children of Eastern European descent.

Once her disease was diagnosed, Sadaf’s parents Muzib Quraishi and Shabnam were faced with the spectre of sponsorships. Regular enzyme replacement being the only treatment, it was soon clear to the parents that only movie stars and industrialists could afford it.

Ranchi-born Brooklyn paediatrician Jamil Akhtar offered to appear before the medical board at AIIMS to explain her case and find sponsors in the US. But, he wasn’t called. The Gaucher Foundation, US, apparently didn’t show much interest. Neither did the Indian government.

Time ticked by, making her parents desperate. This February 28, Muzib and Shabnam stormed a meet on the disease at NIMHANS, Bangalore, where eminent doctors and pharma companies from across the world had come.

“We threatened to immolate ourselves before them if our daughter was left doomed to die a painful death. Seeing our child suffering made us desperate. That’s when AIIMS doctors Neerja Gupta and Madhulika Kabra heard us out,” said mother Shabnam.

The AIIMS doctor duo spoke to representatives of UK-based Shire about Sadaf. “Things looked up,” she said.

Father Muzib added that when the UK pharma firm decided to sponsor Sadaf’s treatment, they gifted her a new life. “Special thanks to The Telegraph for its coverage. The news reports played a crucial role,” he smiled.

source: http://www.telegraphindia.com / The Telegraph, Calcutta / Front Page> Story / by Sudhir Kumar Mishra / Ranchi – October 21st, 2014