In 2007, Aaditya Ravi Dasgupta’s family received devastating news. The kind of news no family ever wants to hear. They learned that their 6 year old son, Aaditya, was diagnosed with a very rare and fatal disease called Niemann-Pick Type C (NPC) that afflicts approximately 500 children, teens or adults worldwide.
Niemann Pick Type C is a genetic lipid storage disease, in which harmful amounts of a fatty substances and cholesterol (called lipids) accumulate in the spleen, liver, lungs, bone marrow, and brain. As a result, NPC causes progressive neurological deterioration with symptoms including dementia, seizures, and cataplexy (uncontrollable falling from laughter that can result in serious injury).
Aaditya is in a major battle for his life as walking, talking, eating, and even remembering how to say “Ma” or “Papa” has become almost impossible.
Last year at this time, Aaditya’s day began with a sleepy smile on his cute little face and his endearing voice calling out for “Mom.” One of his favorite pastimes was watching television and flipping the channels to find shows such as SpongeBob SquarePants, Barney, Dora and Go
Diego Go. Mom received lot of hugs and kisses as Sumati Aunty, family friend and housekeeper, gave Aaditya his Ayurvedic medicine with honey while they prayed. Aaditya enjoyed going to school with Sumati Aunty right by his side to make sure his sense of humor and laughter did not cause him to lose complete muscle power, crumble to the floor and severely injure himself. A physical therapist came to the house every night at 8:00pm and helped Aaditya with rigorous exercise. Aaditya always went to Mom for hugs, kisses and silent reassurances no matter how hard the exercises, with the love and support of God every step of the way.

Today, Aaditya is no longer able to say “Ma” or “Papa,” however he still gives everyone his sweet smiles. His little fingers can’t change the channels on the remote anymore, nor is he able to move his mouth to give his Mom kisses – now just a simple touch of his lips to her cheeks and a stroke of his hand to her face make her smile. Aaditya is no longer able to walk or go to school but he enjoys Sumati Aunty’s company. His sense of humor remains intact and alive and he seems to understand jokes even grown-ups would have a hard time understanding. He also loves music -- listening to his older sister play guitar or the family favorite Beatles CD.
Even at a young age, Aaditya has been very close to God. He folds his tiny hands and prays before every meal, also at bedtime. It’s hard to understand why God has endowed him with an affliction that has no cure. Maybe God tests those who are closest to him? We believe that He wants us to join hands together and find a cure for NPC afflicted children around the world.
In a quest to find a cure for Aaditya, the family has been meeting with numerous doctors throughout India and the US. Dr. Srinivasan from Jeevan Stem Cell Bank in Chennai introduced the family to Dr. S Suresh, a renowned ultrasonologist and Director of Mediscan
Systems. From there, they met with Dr. Sujatha, a genecist at Mediscan, a centre that specialized in prenatal screening and testing. Dr. Sujatha, has taken on the tasks of treating rare diseases in fetal stages and hopes one day to be able to cure rare genetic disease like
NPC during infancy. Today, Dr. Suresh and Dr. Sujatha have established a free diagnostic clinic for Niemann-Pick Type A and Niemann-Pick Type B diseases and with the help of the
Hope for Aaditya and the family they will be able to open a free diagnostic clinic for
Niemann-Pick type C, the first such center in India.
The family has been dreaming of an intracranial stem cell transplant for Aaditya with mysenchymal stem cells. There is research going on in the world of science of a cutting edge treatment where Aaditya will receive a stereotactic implantation of stem cells into eight bilateral symmetric points into his brain. The hope is these cells will graft into new brain neurons and restore function for Aaditya and save his life.
Finding a treatment for Niemann Pick Type C will provide hope not only to Aaditya Ravi
Dasgupta and Tasneem Tankiwala in India but to many others like Addi and Cassi Hempel,
Gabrielle Laverde and Peyton and Kayla Hadley in US, Husein Taher in Tanzania, South Africa,
Roy Green in UK and so many more kids, teens and adults all over the world and in India that have not been diagnosed yet due to the cost and complexity of the diagnostic process
.
For more information go to: www.HopeforAaditya.org
or contact Tasneem Dasgupta
(Aaditya’s Mom) at tasneem@saracreations.com
Cell number 9845298915 or Duriya (Aaditya’s
Aunt) at dlakdawala@gmail.com