The atmosphere in one-year-old Madiha’s home in Mahim is thick with anxiety. Over the past few months, the infant’s anxious parents have helplessly watched the health of their only child steadily deteriorate Madiha suffers from a life-threatening congenital disorder known as osteopetrosis.
The disorder afflicts one in 30,000 infants, affecting the brain’s nerve functioning and leading to terminal bone marrow failure and eventual death. It also causes the bones to become brittle. Madiha requires regular blood and platelet transfusions to supplement the shortage of red blood cells and fight infections that may be caused by this disorder.
Unfortunately, the only known cure a bone marrow transplant costs Rs 40 lakh, an amount that her father, a tempo driver who barely earns Rs 7,000 a month, has been unable to raise. If the Sheikhs succeed in finding a donor on their own, the medical cost will drop to Rs 20 lakh.
Race against time
Madiha was born on March 2, 2012, and was diagnosed with osteopetrosis a few months later. Incidentally, Madiha’s parents Shahista and Irshad Sheikh had lost their first daughter to the same genetic disorder a year ago. To add to their worries, the doctors have informed them that the transplant needs to take place before Madiha turns two, in order for her to survive.
“We weren’t even aware that our first daughter was suffering from an inherited disorder as she wasn’t diagnosed on time. This time, we want to do our best to ensure that Madiha gets the required treatment,” said Anisa, her grandmother. “We were referred to a hospital in Chennai where her transplant could be conducted. But since we haven’t found a donor yet, the doctors say that the entire treatment could cost Rs 40 lakh.
They also informed us that her spleen has already enlarged a lot and that we should arrange for a donor if we want the treatment cost reduced,” said Shahista. Till a donor is found, Madiha has to undergo regular blood and platelet transfusions. She is currently undergoing treatment at Byculla’s Masina hospital.
“About a month ago, she required the transfusions only twice a month. But now, her condition is getting worse and we are having to admit her every 10 days,” said Shahista. Each time Madiha is admitted, the hospital bills run up to Rs 30,000. The family has been paying the bills with a little help from the hospital trust funds, and by selling their jewellery.
“The baby will need an unrelated donor for the bone marrow transplant. Due to this, her medical bills are going to run up to Rs 40 lakh,” said Dr Sujata Vasani, a consultant oncologist at Jaslok Hospital, who diagnosed the infant with this rare disorder. “As she does not have any living sibling, she will require an unrelated, matched bone marrow transplant.”
Lend a hand
Anyone willing to help in any way can contact Shahista Sheikh at 9987824228/ 9867935753