“When it is time for the blood transfusion, she gets extremely upset. She will struggle, trying to pull at her IV tube. One of us holds on to the blood bag, while the other carries her, so we can walk outside. That's how we keep her constantly occupied. She is just too small to understand that we are doing this to save her life.” – Soma Shekar, father
She was rushed to the hospital extremely sick from a rare blood disorderBy the time she was 2 years old, little Deeksha had become very sick. She was extremely weak – unable to walk or even eat. Suspecting jaundice, her parents took her to a big hospital in Davangere, Karnataka. She was immediately admitted and the doctors told her alarmed parents that she had a rare blood disorder Thalassemia Major, where her body lacks enough haemoglobin, the protein that carries blood to different organs. She has hence been dependent on blood transfusions to survive, since birth.
“We used to take her to the clinic in the village. They told us to give her nutritious food, so we gave her tonics and bought eggs to feed her. She would get better and then become weak again. But last year, she kept complaining of stomach pain and passed red urine. We never even imagined small children could become so sick and have such terrible diseases.” – Soma Shekar
Her father cannot afford the treatment that can cure her once and for all
“I work in farms near our village for a daily wage. When there is no work to be found there, I come to Davangere and work loading and unloading heavy sacks. In all, I am able to work for up to Rs 8,000 a month. We don’t have anything else. Even the house we live on has been given to us by the government because we are poor.” – Soma Shekhar
Soma Shekhar is a daily wage worker, while his wife, Vijayakumari, stays at home to take care of their two children. Deeksha's current treatment poses the risk of iron overload that could lead irreparable organ damage. The only way she can be cured is with a bone marrow transplant. But it is a procedure that Deeksha’s parents can't dream of affording.
Even keeping up with her transfusions is becoming very hard for her parents
“When your child is sick, can we keep a count of how much we have spent? In a month, including the travel, testing and medicines, it often comes up to 3,000 rupees. The doctor says that she can get better with a surgery. But even for that, we don’t have the money.” – Soma Shekhar
It is painful for both Deeksha and her parents to keep coming to the hospital for blood transfusions. Deeksha struggles and cries at the sight of needles and each time, her parents have to force her to undergo this procedure. Without a bone marrow transplant, she is also at risk of losing her life. Her parents are hoping for the best outcome for their child.
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