Hope for Aaditya

At seven years old Aaditya Ravi Dasgupta became the first person ever to receive a stem cell transplant for a rare and destructive illness known as Niemann-Pick Type C (NPC). NPC, which is a condition that is compared to a childhood form of Alzheimer's, causes neurological degeneration and seizures and is always fatal and only affects about 500 people worldwide. Kids with the disease develope normally for the first years of their lives and then are suddenly struck with the horriable symptoms of the disease and begin loosing all their functions that they have already learned.

This devastating condition has had a detrimental affect on Aaditya. For the little boy ,who will be turning 8 next month, walking, talking, eating, and even remembering how to say “Ma” or “Papa” has become almost impossible.

Since stem cell have the capability to change themselves into specialised cells and develop into and replace malfunctioning or damaged body organs the Dasgupta turned to these cells for help.

The operation was carried out at the BGS Global Hospital, Bangalore, on December 18 by Dr N.K. Venkataramana, Vice Chairman & Chief Neurosurgeon of the hospital.

He received an intracranial stem cell transplant treatment that is not even available in the United States. Unlike traditional stem cell transplants, these stem cells were put directly through his skull, into his brain and past the blood brain barrier. The cells used for his procedure were mesenchymal stem cells derived from human bone marrow.

Even very shortly after the surgery a notable improvement could be seem in the little boy. He suddenly you could notice that his gaze would shift when people move in his bedroom, his head no longer droops and the fingers of his right hand are able move to touch soft toys placed next to him.

“The child’s deterioration has stopped and there’s some improvement (following the surgery). Next, he has to become active, but we cannot say how long it will take (for him to recover completely),” said Dr Venkataramana.

"Aaditya’s affliction has spawn a global network of researchers, parents and philanthropists who are not only exchanging information on this ailment but are also raising $200,000 to support research on NPC and to evolve an effective treatment for children struck by it. "

During Christmas a group led by Aaditya’s aunt, Duriya Lakdawala was already able to raise $10,000 towards the cause.

“We would like to see more kids benefit from this treatment,” says Tasneem, Aaditya's mother.

This treatment seems to be a very promising treatment for these children. For them, their time is running out and if some kind of treatment isn't available they will certainly suffer an untimely death. So it is very encouraging to see progress being made with stem cell therapies while it may not be a cure it will at least buy these kids some time so a cure can be developed. With the average lifespan of kids with Neimann-Pick Type C being only about 10 years researchers have to move fast if they are to have any hope. What is upsetting to me is that the type of stem cell therapy needed to treat this disease is not available here in the US and since there is little know about the disease it is most peoples only option. As of now there is only one drug available and if insurance doesn't cover it the drugs cost is over $100,000. For families afflicted by NPC the necessary stem cell treatment should be available even if only to buy them more time.