12-Year-Old's Body Is Covered In Painful Lesions And Marks Due To Rare Illness Causing Bone Marrow Failure | Milaap
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12-Year-Old's Body Is Covered In Painful Lesions And Marks Due To Rare Illness Causing Bone Marrow Failure

She has lost all her nails and her skin is full of patches and lesions. She complains of so many aches and pains. If she falls and has even the smallest cut, we need to take her to the hospital and get a blood transfusion. Every day, she becomes noticeably weaker than yesterday. Doctors say nothing can help her now, except a bone marrow transplant.” – Ravi, father

She has been sick with this dangerous condition since she was a child

When Swetha was 5 years old, she fell sick with fever and would bleed from her mouth. Her parents took her to the hospital in Davangere, Karnataka and got her admitted. They were told that their daughter had dyskeratosis, a condition causing bone-marrow failure with dangerous symptoms and high mortality rate. The last 7 years have been filled with pain and struggle for Swetha.

“She is so intelligent, good at studies, and even enjoyed playing sports. But these days, participating in these activities for just one day takes a toll on her. Other students are mean to her about her health and skin at school. So even though she wants to go, we don’t let her go. That kind of physical and mental toll is not something our sick daughter needs right now.” – Ravi

This is Swetha’s last chance to get better

Swetha’s condition is worsening with each passing day. To survive, she needs a bone marrow transplant immediately. If there are delays, she will become too sick to respond to the transplant. Her parents put everything into making sure she could survive all these years, but now they have run out of resources to save her life.

“We have spend lakhs to just keep her alive. We sold what little land and gold we had and now have nothing to arrange for the one surgery that will help her health. I work as a daily wage farmer on others’ land now and what I earn is barely enough to make ends meet. Even taking her to the doctor is something I can’t afford to do.” – Ravi

Swetha’s parents are heartsick that they can’t do anything for their child

“Parents’ hearts ache when they see their child has to endure pain and suffering. I have had to hold back my bright, intelligent child from a lot of things that would have made her happy. I was terrified that her poor health could snatch her away from us. We try to be strong for both our daughters and that is what keeps us going every day, even in this situation.” – Ravi

The blood transfusions are not a permanent cure for Sweta's condition. What she needs is a bone-marrow transplant, else she could succumb to her condition. Her parents are desperately looking for help that can save Swetha.

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Patient Shwetha R is 3 years old, living in Davanagere, Karnataka
Being treated in Narayan Health and Research Institute, Bengaluru, Karnataka

Receiving treatment for Dyskeratosis Congenita

Click here to know more about Shwetha R