At 2 years of age. Our children were perfect. We didn't even imagine they would be affected by a disease so rare and unexpected that people would take so long to even diagnose it. We lost our daughter to it. My son's symptoms have just begun to show. There's time to save his life. We are just short of the means.It started with her losing balance whenever she walked. Slowly, she began to lose her motor functions. Then, she began to go deaf. The disease affected her vision also. As we watched our daughter wither away the voice we so loved disappeared. She couldn’t talk, couldn’t say our names, couldn’t remember us, and after a while couldn’t even recognize us. The seizures took over her life until she stopped breathing.
My daughter was the best gift we could ever receive. As a mother, it was a privilege to watch her grow, witness her firsts, hear her talk, hold her hand while she walked, and even applaud when she sang. Dharanipriya could remember lyrics of every song she heard and sing. Everyone would wait to hear her sweet voice ring through our house. And now, I just have her memories.
My name is Madhavi. My husband Vinay and I live near Vijayawada where he works as a lecturer at a college. We were once a happy family. We had a beautiful daughter and we were expecting another child. She fell sick, and regardless of which doctor we went to or how many tests we ran, our questions remained unanswered. Now we have all the answers. Our daughter is gone, and our son seems to be following her.
Dharini’s condition got worse over the past two years right from when Rithwik came into our lives. Until a month ago, all the poking and prodding kept giving us different diagnoses. They said she had cerebral palsy, cancer, and so many other things. The drugs never worked. Sometimes, they made her worse. When her brain began to degenerate, the doctors suggested chromosomal testing to see if it had any genetic origin. We found out that Dharini has Metachromatic Leukodystrophy, a rare genetic degenerative neurometabolic disorder that is difficult to diagnose and cure.
One month ago, we got the worst news of our lives. BOTH our children tested positive for the disease.
When Rithwik turned 2, he kept falling when he walked. We did not really connect his symptoms to Dharini’s. At this time, her condition had deteriorated. Vinay and I always split our time between our children. No parent ever wants to imagine this situation where they can lose both their children so we never even related the symptoms.
Now when we look back, we see our daughter in him. She was perfect, just like he is. He used to run around, until the symptoms knocked him off balance. It happened with her too. We know what comes next. We saw how she suffered. She lost everything one by one. It was not just the disease that broke her, the tests – biopsy, needles, lumbar puncture, and the fear – all together broke my little child. I cannot bear to think about the same happening to Rithwik.
Her struggle did not go in vain. At least Rithwik does not have to go through the pain for diagnosis. There is time to save him. We have a donor. We have a treatment plan. We just do not have the funds to go through this treatment.
Vinay and I sold our assets and made an advance payment for this transplant that can help Rithwik overcome this disease. We still have a long way to go. The cost of this treatment is Rs. 25 Lakhs and we have nobody to help us. Please, we cannot lose another child to a disease so deadly. We cannot let our daughter’s struggle go in vain. Let her save her brother.
They used to play together whenever she mustered some energy. Towards the end, even when she was bedridden. Even if she couldn't recognize us, there was some magic going on between these children. They comforted each other. We'd like to think that our daughter is up there, trying to save her brother.
Supporting Documents
The specifics of this case have been verified by the medical team at the concerned hospital. For any clarification on the treatment or associated costs, contact the campaign organizer or the medical team.Click here to contribute to Rithwik or for more details on this campaign.
