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Childhood is a period where most children live their best life, without a care in the world. But my son makes hospital visits month after month, and sometimes even thrice a month! – Shyama Patil, mother.
For the last 15 odd years, Vilas and Shyama Patil’s son has unfailingly visited the hospital every 15-20 days to undergo blood transfusions. He suffers from thalassemia, an inherited blood disorder, which occurs when the body cannot make enough of hemoglobin, an important part of red blood cells.
My baby boy was doing so well and we were just starting to enjoy his growth phase when he developed fever, swelling, and paleness. His diagnosis came as a big shock to me. No one in my family has ever faced such a condition.” – Shyama
It all started when their 8-month-old lively baby started showing symptoms of lethargy. A prolonged fever and paleness prompted the worried parents to visit a nearby hospital, where after multiple tests, he was diagnosed with the rare blood disorder. Thus, due to fewer red blood cells in the body, he has had to undergo monthly blood transfusions since then.
The 16-year-old now requires 2-3 packets of blood, twice or thrice a month
“When he was younger, just 1 packet of blood every month would suffice; now, as he has grown with age, his condition has worsened, and he requires 2-3 packets of blood every 15-20 days, making things very difficult not only for him but also for us as a family." - Shyama
All these years of grappling with this disease has also had huge repercussions on the boy's growth and development. At 16-years-old, he looks like a small child, more than half of his actual age.
(L) Shyama and Vilas' elder son, Aadesh, with their younger sonEventually, as hospital visits became a routine, life threw another curveball in their lives. Last year, their son was diagnosed with thalassemia major, a severe form of thalassemia.
“He felt extremely sick. He had severe fever, continuous coughing, paleness, and swelling; he even stopped eating food; his situation had never gotten this worse.” – Aadesh, brother
Now, their son needs a bone marrow transplantation costing 35 lakhs
The increase in frequency of transfusions can lead to an iron overload in the teen's body, which could in turn have drastic consequences including fatal organ damage. So, the doctors have decided that due to his worsening condition, transfusions will only do more harm than good, and what he needs now is a bone marrow transplant. It is the only permanent solution for his condition, the cost of which would be approximately INR 35 lakh.“We do not have any savings; my husband is a daily wage laborer on a farm, and earns a meagre 400-500 rupees per day. For us, 35 lakh rupees is a huge amount; I cannot even imagine such an expense. It is impossible for us to gather it on our own. We have exhausted all our savings for his treatment and other related expenses. None of our relatives can also lend us the money as we are all living on our day-to-day earnings." - Shyama, tearfully
“I have seen my brother transition from inactive to active with every bag of blood. He has a severe dip in his energy levels every 8-10 days. On some days, he just keeps sleeping, due to severe fatigue. It pains me to see him in such a way. I just want him to get better soon so that we can get back to being regular siblings and play cricket together, which is his favorite sport." - Aadesh
This family is in desperate need for your help; they only wish for their son to return to normal, so enjoying the simplest pleasures of life doesn’t come with a fortnightly timeline.
Click here to contribute.
The identity of the child is protected in adherence to government guidelines.
