03 February,2013 07:35 AM IST | | Vinod Kumar Menon
Tears of happiness rolled freely down the cheeks of Ruchita and Rupesh Pednekar on Saturday. After a worldwide search, doctors have finally found a donor whose bone marrow cells matched with their 17-month-old daughter. But even this momentous news has come with a rider: a price tag that is currently unaffordable for the Kandivli-based couple.
Ruchita and Rupesh Pednekar with their daughter Anvi, who suffers from Infantile Myelofibrosis
Doctors say the cost of transporting the stem cells from the US to Bangalore would be extremely high and the entire procedure including hospitalisation and surgery charges could cross Rs 25 lakh. Had it been an Indian donor, the cost for the treatment would have varied between Rs12-15 lakh.
Speaking to SMD, Ruchita said, "I received an SMS from Dr Shobha Badiger on January 30 informing us that they had traced a donor for Anvi in the US. She asked us to come to Bangalore immediately."
"We have spent nearly Rs95,000 on our initial visit to Bangalore and have around Rs 16.50 lakh left in the bank thanks to so many people who helped. Now we have been told we need Rs 9 lakh more. I have written to various trusts and charitable institutions," she said
The Sunday Mid DAY report, published on December 2 2012, resulted in an outpouring of global support for Anvi
When contacted, Dr Damodar said, "The child is yet to come to Bangalore. Once she arrives, we will start the initial line of investigations and hopefully the transplant will be done. The entire process will involve two to three months stay in the hospital."
Speaking exclusively to SMD from Bangalore, Chairman of Narayana Hrudayalaya Group, Dr Devi Prasad Shetty said, "I am aware of Anvi's case. We will provide all possible financial concessions."
Dr Shetty, who was conferred the Padma Bhushan in 2012, lamented the abysmal awareness about umbilical cord blood banking in India. "We do not have public cord blood banking in our country. Over 28 million babies are born in a year and the irony is that we discard 28 million umbilical cords without preserving them, as storage of each cord costs between Rs 30,000 to Rs 40,000. The government should create cord banks. Even if we have 1.50 lakh cords available, it would reduce the waiting period for a large number of patients."
The Indian registry has a list of only 25,000 donors. Compared to this, the US and some European nations have around 4 million donors each. The cost for procuring the stem cells from India cost around Rs 6-8 lakh. The cost is Rs 20 lakh if it has to be imported.
"We have been encouraging people to become stem cell donors by registering themselves with Indian registry site www.datriworld.org. Around 200 ml to 300 ml of white cells are taken from the donor's body, which is sufficient to treat a single case," Dr Damodar added.
For now, till the stem cells arrive in Bangalore, Anvi will be taken to Jaslok hospital for another course of blood transfusion on Monday.
The plight of the Pednekar family, who had lost their elder child and was fighting to save little Anvi, was first reported by SMD (âSpent couple battle to save daughter', December 2, 2012). Within a week of the report being published, the family received overwhelming support from well-wishers from North America, Europe and the Middle East donating over Rs 16.50 lakh for treatment.
Ruchita said she wants to spread awareness about stem cell donations. "We will register as donors of stem cells with DATRI, a non-profit organisation that has been set up to help save lives of those suffering from life-threatening disorders like leukemia and lymphoma."u00a0
