Tanmay Sarkar an 11 year old child diagnosed to have Pseudotrophic Muscular Dystrophy (PMD) which is a type of Duchenne muscular dystrophy (DMD) since last 4years. It’s a genetic disease which happen 1 in 50,000 children, which result in degeneration of his muscle cell and premature death.
For this gene mutation all the muscle cells of his entire body collapsed day by day. The entire strength of his body totally broke down. Now he cannot able to walk, stand up completely. His breathing system is crumpling day by day. He cannot breathe properly for lack of muscles in his lungs, diaphragms and intercostal muscles. He moved one place to another by the help of his dear ones (Mom, maternal uncles and grand mom grand pa) and support systems (Wheel Chairs, Aaya etc.). An artificial breathing system had been installed at his home to meet his need of oxygen level. Doctors said that the condition of his myocardium (i.e. muscle which helps to pump the hurt) has been worsening and it is at stage 2 because of degeneration of his muscle cells. It will run his hurt 3 to 4 year more and after that it will stop his hurt, and that will be the end of his life. Now he is completely dependent on medicines and some support systems. Without medicines and therapies his life would not able to run any further.
Till now, there is no curable treatment for PMD and ongoing medical research is going on regarding PMD. Gene therapy and Stem cell replacement is one of the successful ways to make the patient cure from this. The only treatment to make the patient alive more is Physical therapy, drugs injection, inhalation and respiratory assistance. But, we the family members planned to go through gene therapy in later time depending on his condition.
When he was at the age of 7years we the family members discover that Tanmay each and every time fall down from his standing position, walking position. He could not able to stand up from his sitting position as well. After advising and consultation with doctors and hospital doctors suspected that he could affected with some type of Muscular dystrophy. After doing different tests and examination doctors of Dr. B.C Roy PG Institute of Pediatric Sciences (A child hospital in Kolkata under department of Health and family welfare, Govt. of West Bengal) declared that he was affected with Pseudotrophic muscular dystrophy (PMD). At present Tanmay is under treatment of Dr. P. Chakrabarty. Some medical documents are uploaded in the page.
From last May (i.e. May 2015) monthly expenses for treatment of Tanmay are almost Rs. 18,000(USD 285.00) to Rs. 20,000(USD 317.00) depending on his condition.. His mother i.e. Aparna Sarkar is a small job holder in a private firm in Kolkata. Tanmay’s monthly expenditure (appx.) are as follows:
1. Medical expenses: Rs. 4,000.00
2. Physiotherapy cost: Rs.200.00*30 = Rs. 6,000.00
3. Nurse Salary: Rs. 6,000.00
4. Respiratory assistance: Rs.2000-Rs. 3,000
Tanmay’s Mom Story:
But the most tragedy is Mr. Sanjay Sarkar, i.e. Tanmay’s father left him and his mother for this disease. By his opinion that his mother is responsible for this calamity and she and her family should take responsibility of him. For this he filed divorce petition also. Now, Tanmay’s mother is the only earner of the family. We the family members (grand pa, maternal uncles of Tanmay) help her at our best. Since 4 years we expended almost Rs.(INR) 12,00,000(USD 19000) for his medical assistance. Last year also Tanmay passed through with a surgery which cost us more than 5lacs. But, now we are suffering for lack of money. We spend every of our bank savings for the treatment of Tanmay and sold almost of our property to run the medical expenditure of Tanamy. Last month doctor also suggested for his knee traction which will cost almost 3lacs. But we didn’t able planned yet to do it because of these huge medicine and other expenditure burden.
Now we require your helps to keep him alive and active. I(Ankan Banerjee maternal uncle of Tanmay) have been trying TO RAISE MONEY for his medical expenditure for now and future, through various means but am finding it a very big challenge to arrange money for his treatment. Whatever we had saved has been spent for this treatment. I make a heartfelt request to kindly help me in treating Tanmay. I shall be greatly beholden. Every penny will be counted. Every penny counts and we firmly believe that No one should have to choose between food, education and quality healthcare. Tanmay has the right to live and he is fighting it out every day. We need your support to raise money for his treatment and rehabilitation. Every penny and every prayer counts. So please help us !