Tanmay was born in November 2002. Parents reported a healthy childhood till the age of five. Family was living a happy normal life till then residing in the Mumbai suburbs.
In 2007, Tanmay got fever which was diagnosed as a case of chronic malaria, he was hospitalized for 15 days at a local hospital. Fever relapsed, he was brought to Lokmanya Tilak Hospital, Sion, where he was hospitalized and treated for malaria. One of the signs of malaria is the increase in size of liver and spleen which usually reverts back to normal after treatment. But it did not happen in Tanmay’s case, his liver and spleen remained enlarged. His parents resorted to alternate system of medicines for treatment.
By the end of year, they consulted a renowned pediatrician in Mumbai. He diagnosed the condition as Gaucher’s disease, a genetic disorder characterised by excess fat storage in different organs of the body. With this news, came the information that the treatment was much beyond the financial capacity of the family. Further distressing was to know that, without treatment the child may not survive another few years. This disheartening information affected the parents but the emotional support came from the superiors where Tanmay’s father was working. They decided to find way to get access to drugs which would control the disease.
Tanmay’s father sought pediatrician’s help to start treatment for his son, who, spoke to Dr. Aabha Nagral, who was a member of the Indian Advisory Board of a compassionate programme providing this very expensive drug free of cost.
Says Tanmay’s father, “Within fifteen minutes of my call to pediatrician, he called me back and asked me to speak to Dr. Aabha”. It was a beginning a new hope.
This drug involved taking an injection infused through the vein once in 15 days. The family was put in touch with a support group called Lysosomal Storage Disorders Support Society (LSDSS), which provided immense moral support, and has been struggling hard to convince the Indian government to provide medicines for children with Gaucher's disease like Tanmay, who are not so fortunate.
Says Tanmay’s father, “There were no symptoms, which could point that my son was having any disorder”. At present again there are no side effects from treatment. Precaution is taken from getting hurt and overexertion sometimes tires him.
Today Tanmay is a very intelligent, ten years of age child. He is leading a healthy and normal life, likes to play musical instruments. He has even taken piano lessons.
Tanmay is on enzyme replacement therapy. Treating doctor always mention it to Tanmay’s parents that he is a very cooperative child, and never misses his dose. Tanmay, at this young age links his disease to malaria, and tells his parents that if they had prevented malaria, he wouldn’t have developed this condition.
Tanmay’s father is extremely thankful to the doctors and agencies who are helping his child for the timely support and help.