For a parent, there is nothing more painful than asking her child to not jump around and have fun in their most playful years. To tell Manaswin, her happy-go-lucky child, that he should not tire himself out too much at his tender age of three, Maheshwari has to fight her emotions, cook up stories and try really hard to make him understand. “His medical condition has forced me to keep him away from all things that are dear to him - he can’t run, jump, play or even watch his favourite Chhota Bheem on TV because he can’t strain his eyes much,” Maheshwari says.
Manaswin has a rare disease called Mucopolysaccharidosis type II, or Hunter syndrome. Almost exclusively affecting males, it is known to affect only one in 170,000 males globally – and Manaswin is one of them. It is a progressively debilitating disorder, which means that age 3, it is only the beginning of a Manaswin’s suffering.
The disease is such that his body fails to break down a kind of sugar that builds bones, skin, tendons, and other tissues. Those sugars have built up in his cells and damaged many parts of the body, including his brain. “Since last month, all my energy goes into restricting my 3-year-old son’s movements to his bed because the doctors told me that the smallest movement can make the cholesterol in his body enter his bloodstream thus putting his brain at risk and even leading to multiple organ failure,” his mother Maheshwari says.
Manaswin requires chemotherapy followed by an urgent bone marrow transplant surgery. Doctors have advised Maheshwari to get the treatment before he turns 4 so it doesn’t advance to the other parts of his body.
The treatment requires a staggering Rs. 10 lakh in the next 10 days. “This amount is way beyond our capacity. With your help, we can rescue our only child from this condition that’s ruining his childhood,” says Maheshwari.
You can help Manaswin, donate here.
For Maheshwari, his son’s debilitating disease is just the hardest blow among several others. “My family is going through a very bad phase. Just last year, while I was cooking, my leg twisted and I suffered from a severe ligament tear. I was advised complete bed rest and physiotherapy sessions to regain normalcy. The pain was so unbearable, over a period of time, my husband ended up spending over Rs. 4 lakh on my tests, medicines and physiotherapy sessions,” Maheshwari says.
She was advised to take these sessions for a year, but looking at his condition now they have decided to discontinue so they can save up for Manaswin’s treatment - their son’s health is their priority. “We’ve spent Rs. 2 lakh on Manaswin so far and we’ve got nothing left to continue his treatment. I’m a housewife and my husband is a civil engineer who makes Rs. 35,000 every month. My husband being the sole breadwinner of our family, we’re struggling to arrange the money required for his treatment,” she laments, breaking down into tears.
Every bit counts at this point, and any donation from you will help better their lives. You can donate here.
Manaswin has gone through three aggressive chemotherapy sessions so far. With every session, he is becoming weaker. Since this condition has made his body cholesterol resistant, most of the cholesterol has accumulated in his head making it appear swollen and large. “He cries and his body burns with fever at times - it makes me feel really helpless because I can’t do anything to take away that pain. We have to make him go through this hell for his own well-being. The worst of all is that my Manaswin can’t express what he’s feeling - he can just say Amma or cry, it breaks my heart. Like his cousins, he wants to start going to school too. Every time we go to their place, he runs to their school van to see them off and seeing them disappear on the road towards their school makes him really upset. He really longs to join the.”
Thankfully, Manaswin’s father is found to be a matching donor, the transplant can free him from this painful ordeal of chemotherapy sessions and tests. “We just need the funds so we can get the treatment that promises to save his life at the earliest. It’s heartbreaking to see him struggle at such a young age - I can’t do it anymore. Please help us out - we don’t want to lose our only son,” Maheswari begs.
