“When we learned of my son’s condition, all our relatives asked us to have another child. But how could I even think about having a second child that could possibly suffer the same fate as my Neel? I have seen the pain and distress this disease has put him through all his life. No parent would ever knowingly put their child in harm’s way like that.” - Vandan, father
A potentially fatal disorder has weakened his immunity3 years ago, little Neel was diagnosed with Hyper IgM syndromes. It is a group of rare disorders in which the immune system does not function properly. Hyper IgM syndromes are caused by extremely rare and potentially life-threatening genetic mutations that severely compromise the immune system. As a result, Neel’s body lacks the inability to produce antibodies, making him very susceptible to infections.
“I am not well-educated, nor do I have much medical knowledge, but I refused to believe that there was no long term solution to rid my son of this disease. I would read up as much as I could, hoping something like a bone marrow transplant could be the answer. But every single time I would be faced with the same response from the doctor - there is no cure for this disease.” - Suvidha, mother
A surgery for tonsillitis had severe effects on himAs a child, Neel would get sick quite frequently. Every month or so he would run a fever, cough, and even have water leaking out of his ears. Initially, his parents tried to get him treated locally, but the doctors tried to put their worries to rest by telling them that children tend to get sick and that it would get better as they grow. Only, that didn't happen for Neel.
When he was about 4 years old, his tonsils swelled up painfully and he was unable to speak or eat. But even hours after undergoing a tonsillectomy, Neel didn't wake up from the anesthesia that he’d been administered and he had to be put on a ventilator. It took him about 5 days to regain consciousness.
After that, he would suffer from pneumonia every few months - which is entirely unheard of in any person, let alone children. Not taking any chances, his parents rushed him to a bigger hospital in Mumbai, where they learned of his condition after tests confirmed his weak immunity.
He needs an expensive injection each month to stay aliveSince his diagnosis, Neel has been undergoing immunoglobulin replacement therapy. Each month, the 12-year-old is administered with 15 grams of an infusion containing antibodies that are meant to restore immunoglobulin levels to normal. But this is a very expensive treatment that has inevitably dented his parents’ pockets.
“They’ve told us that the only way our boy will get better is with continued treatment. One injection costs us nearly 25,000 rupees each month, and the past 3 years have drained us of all we had. We even sold our land and jewellery to pay for his treatment. My husband is just a farmer, and with the rains recently, we’ve had a bad crop year too. We can barely make ends meet and we have nothing left - all our resources are exhausted. 8 lakh rupees is a lot of money, money we can't affford. We are struggling to keep his treatment going…” - Suvidha
Wise beyond his years, Neel is a bright child and very energetic. He is a stellar student, with good grades, and loves to swim and play cricket. His parents have big dreams for him, and he wishes to make them his reality someday. He yearns to live his life to the fullest, but his condition is holding him back.
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