He is 20 and a student of Msc (Biotechnology) at Mumbai's St Xavier's College, living with the knowledge that death is not far.
It has been two decades now. Every 15 days since he was a 3-month-old baby, Parth Thakur, who is thalassaemia major, spends around 16 hours hooked to pipes that pump blood from a regular set of donors into his body.
He is 20 and a student of Msc (Biotechnology) at Mumbai's St Xavier's College, living with the knowledge that death is not far.
"When I was in class 7, I started reading about thalassaemia which is a genetic blood disorder. Most of the patients live till they are 16 or 17," he said. Adavancement in medicines since then has prolonged his lifespan. But the only child of two working parents who are based in Baroda says that most thalassaemia major patients can hope to live till the age of 30. And thus, he began a journey to make his life count.
Last November, Parth invested Rs800 on stationery and letterheads and started an initiative to fulfill wishes of those living with thalassaemia and blood cancer. "Blood disorders affect you psychologically. Since you are dependent on others for blood you feel like you are no one. I wanted to help such patients feel happy and give them memories," Parth adds.
These memories so far have included a trip to theme park Imagica, new laptop or something as simple as encyclopedia on trains.
He gets sponsors and corporates to fund these wishes and has over 70 volunteers working in Gujarat and three in Mumbai with him as they go about bringing smiles to children and adults alike. All this is done very professionally though. "We do a background check about the patients as well as the volunteers. Anyone who wants to donate has to fill a form online and can select a budget for the wish they would like to sponsor," Parth explains.
He has also reached out to the principal of his college and students looking to volunteer will be directed to Parth if they so wish.
He has also inspired two of his classmates who have joined him. Komal Mishra (20) gushes: We did an event with children's hospice Happy Feet Home recently where we fulfilled 50 wishes at one go. It was such a good feeling to be a part of it!"
Roma Sunder (20) adds, "So far, we were literally doing nothing apart from focussing on our own selves. He has been in the city for just three weeks and he has already done so much."
Parth and the other volunteers also conduct awareness campaigns in schools and urge couples to get tested for thalassaemia before getting married. "This is something I do on the sidelines though. The reason I am doing biotechnology is because I want to get into research and help find a solution to the disorder," he shares.
While thalassaemic patients are prone to fatigue, Parth works with a travel company during this summers and takes children to trek. He has also been to high altitude Bhrigu lake trek in the Himalayas that is 15,000 ft above the sea level. "It is all about your willpower," Parth declares.
About thalassemia major
Thalassemia major occurs when a child inherits two mutated genes, one from each parent. Children born with thalassaemia major usually develop the symptoms of severe anemia within the first year of life. They lack the ability to produce normal, adult hemoglobin and experience chronic fatigue.
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