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“My daughter Jamuna was the school topper, in her 10th class quarter exams also she scored an impressive 432/500 . Everybody had such high hopes for her - we were expecting her to break records with her 10th board results. But her rare disease completely took over her life by then; she couldn’t even move, let alone study or write exams. Today, she is just struggling to stay alive.”- Pandeeswari, mother.
‘She has been living with this for over ten years, but her condition is critical now’
Jamuna, now 18 years old, was a vibrant smart girl who had big dreams. She used to be the apple of her teachers’ eyes. She wanted to study and secure a good job so that her modest family background could be elevated. But roughly ten years ago, something happened that was completely unexpected and would change the course of the rest of her life.“In 2013-14, we observed dry, dark patches on her skin. It had started forming on all parts of her body. We were told that it was just a skin condition at first and she was taking medicines for it. But she started becoming weaker with every passing day. Further tests told us that she was suffering from a severe rare condition.”- Pandeeswari.
Jamuna was diagnosed with Systemic Sclerosis is a group of rare diseases that involve the hardening and tightening of the skin. It has now also caused interstitial lung disease with high blood pressure in her, which has completely affected the quality of her life.
‘She cannot survive without a lung transplant at the earliest, but we cannot afford it’
Owing to her condition, Jamuna is completely dependent on an oxygen cylinder now. She cannot eat, sleep or move properly. She does not look like an 18 year old. Her lungs have been completely damaged, and a lung transplant is the only way she can survive now.“We spend close to 50,000 every month for her medicines and oxygen needs. My husband is an ordinary bus driver, my son is in college but even he has taken up odd jobs to fund his sister’s treatment. I cook at small stalls and at events to make whatever money I can. But this is not enough. We will never be able to afford the 35 lakhs required for her transplant.” - Pandeeswari
Jamuna hopes to go back to school, continue her studies and live the life she had dreamed about. But without a lung transplant at the earliest, this will not be possible.
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