“I can’t explain how difficult it is for us - with a sick child in a city we have never been to. We don’t understand what the doctors are saying, the symptoms they are talking of. All we know is that Asdak needs an urgent liver transplant or else his rapidly damaging liver will be the cause of his death,” - Mohd. Sohel (father).
‘We thought the injections and medicines would be enough to cure him’Asdak is 9 years old and is fighting Wilson’s Disease - an inherited disorder that has caused too much copper to accumulate in his liver. But this is not the first time his parents are being told about their son’s disease. Despite hailing from a remote village in Gujarat, Sohel and Sugul didn’t waste any time to take him to the doctor when they first noticed Asdak’s bloated belly, yellow eyes and high fever.
“But the doctors told us that he will be fine with medicines and occasional injections.We were very careful about his health and gave him nutritious food. I don’t know how this turned into something so fatal suddenly?” - Sugul (mother).
Copper is accumulating in his body to a life-threatening levelAsdak’s liver does not release copper into bile as it should, slowly damaging it. After enough damage, the liver releases the copper directly into the bloodstream, which carries the copper throughout the body. The copper buildup has started to damage his kidneys and can even cause severe brain damage.
“We don’t have much time left. His uncle is ready to donate his liver and the test results are due for tomorrow. We are praying to God that he is the matched donor. The infection in his body is under control now - this is the right time for the transplant,” - Sohel.
‘Abbu, what if I never come out alive of the operation theatre?’The 9-year-old is a bright boy who is studying in standard 4th. Despite a restricted life, he loved going to school. His disease never allowed him to have a normal childhood but he hoped that the medicines would cure him. But, with his condition worsening in the last 10 days, he has understood that a transplant is his only cure.
“He is scared. He keeps asking me if the transplant will cure him. I assure him that it will but in my mind I worry about the money I need for it.”
With no rain in the last one year, Sohel hardly has any money to feed his family - affording the transplant seems impossibleSohel hasn’t been able to grow anything in the little piece of land he owns for the last one year. But he knew that he would have to work to afford his son’s treatment. He toils hard on other’s fields for a meager Rs 200/day. The money isn’t enough for two square meals a day for the family.
“I have already spent 3 lakhs and all of that is borrowed from my neighbours and relatives. I am already under so much debt, who will give me another 20.5 lakhs for the transplant? There is no one else to whom I can turn to, please help me.”
THE ABOVE CASE IS SUPPORTED UNDER AFFORDABLE LIVER TRANSPLANT INITIATIVE:
This boy is fighting a rare disease and only a transplant can save him. You can help him get that.