Friends, those of you that are following this blog, Jason would like you all to know that Sawsan and him have reached safely to India and are in the Hospital. We are still short on the funds, so those of you have not had a chance please do consider a donation. Below is an email from Aaditya's Dad.
On Fri, Feb 20, 2009 at 8:08 PM, Ravi Dasgupta wrote:
As most of you know my son Aaditya had an intracranial stem cell transplant a couple of months ago for a rare genetic disorder called Niemann Pick Type C ( its a storage cell disorder that causes cholesterol to build up in cells eventually killing them ). There are currently about 500 children around the world suffering from this disease for which there is no known cure.
My sons treatment was covered in Bangalore Mirror last month and Hidustan Times did a front page cover of it in all its editions.My son is the first child to get an intracranial stem cell transplant for this disease and also infusions of Cyclodextrine ( a complex sugar that has been known to combine with the cholesterol and take it out of the body in mouse models ).
While grappling with my sons condition my family has come across several other families in the same situation. My sister in law Duriya ( cced on this mail ) has set up a web site www.hopeforaaditya.org and with the help of fund raisers ( especially by my neice Shama ) was able to collect about $ 7000 in the USA. The stem cell treatment for my son had cost us Rs 4.5 L which was paid for entirely by the hopeforaaditya funds plus some help from my family. The support was so strong that I actually have only had to pay for his hospitalisation during the cyclodextrine infusions.
I am writing this mail as Sawsan Mobarak another child with NPC is arriving in Bangalore today and we hope to put her through the same treatment.
The stem cells come from Stempeutics in Manipal Hospital and the transplant will be done by Dr. Venkataramana a neurologist with BGS Global hospital.
Duriya and my wife Tasneem have been pleading with the hospital to reduce the cost of treatment ( they had quoted $ 35000/- for the package initially and we have got some releif.
While we will continue to work on the hospital its already clear that we will need to raise a lot of funds for this procedure in a short period.
This mail is to ask for your help. I will be contributing Rs 50K myself and I hope my friends and other well wishers will pitch in with what ever help they can.