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4 years later, their mother succumbed to cancer, leaving the two siblings on their own. It was a difficult time for them, but they managed because they had each other. They had just been adjusting to this new way of life, when Uttara was diagnosed with a brain tumour. With everything their family has already been through, for Abhinandan, this news pretty much felt like the end of the world.
Unbeknownst to her, she had started to lose sensation in her leg
In June 2020, Abhinandan had been tidying up their modest 1-bedroom home, and noticed a trail of blood leading to his sister’s room. Panicked, he rushed in to check on her.“The bottom half of the bed was soaked with blood! But she didn’t know she was bleeding until I pointed at her foot. It worried me that she had hit her foot somewhere and not realised it! But when she told me she couldn’t feel me wrapping the bandage on her foot either... I was terrified.” - Abhinandan, brother
(L) Uttara before she was diagnosed with brain tumour.For weeks he helplessly watched as his sister’s symptoms worsened
Over the next few weeks, Uttara’s condition progressively worsened. The numbness in her foot gradually spread to her leg and her arms, amid her tests and scans to figure out what was happening. The reports detected a tumour in the 21-year-old’s brain, which had been nothing short of devastating for the siblings. But, what was more shocking was that only a week later, Uttara started losing her speech.“The last thing she was able to say was ‘sorry’. She apologized for getting a brain tumour! Then she made me write down a list of her old teachers, some employers, people who could help take care of me in case she died...” - Abhinandan
An emergency surgery delayed tragedy, but she wasn’t out of the woods yet
Doctors performed emergency brain surgery to remove the tumour before Uttara’s condition deteriorated further. For a week post-surgery, she was able to sit up and talk. But soon she fell unconscious again and doctors said she needed another surgery to make it through. However, despite his best efforts, Abhinandan was struggling to arrange enough money and Uttara was running out of time.“I was still in college, and was making plans to take on a job so my sister could rest at home. She’d taken care of me for so long, carried so much weight on her shoulders with a smile on her face. Now, it was my turn to help her. She’d never needed me as much as she did at that moment. But I had no way to arrange the amount for the surgery that could save her…” - Abhinandan
You became the ray of hope that these siblings had desperately needed
With each day that passed by, the fear that he’d lose his sister intensified and Abhinandan felt lost. As a college student, the 19-year-old had no way to ensure that his sister could get this final surgery. Just when it seemed like all doors had closed on him, you came to these siblings’ aid and helped Uttara undergo her life-saving procedure.“It’s been 2 years now, and it has taken a long time for us to come this far. My sister underwent the surgery successfully, but she had to relearn how to walk again and needed some help with her speech. But now, with your blessings, she is doing very well. I am extremely grateful that you stood by our side when we needed you the most. You saved not just her, but in a way, you saved me as well. Thank you, thank you so much!” - Abhinandan
Srabasti and her brother were fortunate that your help arrived before something bad could happen to her. But the bitter truth is that many people grappling with rare disorders do not receive the same help. Millions of people suffer from cruel symptoms such as restricted movement, weakness, debilitating pain, etc, due to which their life becomes a living nightmare.
If they do not get treated within a specific period of time, their quality of life suffers, and eventually they face the risk of death. Funds stand between them and their healthy, bright futures. You can help avoid these complications, by donating to Milaap Rare Disease Fund, which will ensure that no person suffering from rare diseases is left behind.
Click here to learn more about how you can make a difference.
