{"id":28183,"date":"2026-08-08T21:42:12","date_gmt":"2026-08-08T16:12:12","guid":{"rendered":"https:\/\/pages.milaap.org\/?page_id=28183"},"modified":"2026-08-08T21:47:49","modified_gmt":"2026-08-08T16:17:49","slug":"rare-blood-disorder-bone-marrow-transplant-story","status":"publish","type":"page","link":"https:\/\/pages.milaap.org\/hi\/rare-blood-disorder-bone-marrow-transplant-story\/","title":{"rendered":"16 Years of a Rare Blood Disorder, One Bone Marrow Transplant, and a Father’s Prayer Answered"},"content":{"rendered":"
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MILAAP SUCCESS STORY · Bone Marrow Transplant<\/h6>\t\t\t\t<\/div>\n\t\t\t\t
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16 Years of a Rare Blood Disorder, One Bone Marrow Transplant, and a Father's Prayer Answered\n<\/h1>\t\t\t\t<\/div>\n\t\t\t\t
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My son’s skin turned yellow within a day of his birth. It took us six years and hospitals across the country to even learn what was wrong with him, and many more before a doctor finally agreed to treat a disease so rare that most hospitals turned us away.<\/p><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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16 Yrs\n\n\n\n<\/p>\n

Spent between diagnosis, weekly blood transfusions, and a transplant\n\n\n\n<\/p>\n <\/div>\n

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6 Yrs\n\n\n\n<\/p>\n

From his birth in 2009 to a diagnosis in 2015\n\n<\/p>\n <\/div>\n

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3 Hospitals\n\n<\/p>\n

Visited across the country before a doctor finally agreed to treat him\n\n\n\n<\/p>\n <\/div>\n<\/div>\t\t\t\t<\/div>\n\t\t\t\t

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A prayer that began the day he was born<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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Every morning, I leave home before sunrise to serve as a priest at a nearby temple, offering prayers for families seeking peace, health, and hope. But behind every prayer I recited for others, there was always one silent prayer of my own. I simply wanted my son to live.<\/p>

We first noticed something was wrong immediately after he was born in 2009. His skin started turning yellow the very next day, and doctors had to place him under intensive care. From then onwards, he was constantly falling sick. For years, we visited different hospitals and consulted numerous doctors, but no one could tell us exactly what was wrong.<\/p>

It wasn’t until 2015, after countless tests and consultations at hospitals including \u090f\u092e\u094d\u0938 \u0926\u093f\u0932\u094d\u0932\u0940<\/a> and PGI Chandigarh, that doctors finally diagnosed him with a rare form of anemia. They explained that because the disease was so uncommon, very little research had been done in India, and the only long-term treatment would eventually be a Bone Marrow Transplant.<\/p><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t

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\u201cIt wasn’t just the illness that frightened us. It was hearing that nobody was willing to treat our son.\u201d<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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\u2014 Rajiv, Father<\/span><\/p>

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Sixteen years of somehow managing<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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I earn only a modest income through my work as a priest and occasional driving jobs. Every week, my son needed blood transfusions just to survive, and each hospital visit brought fresh expenses for blood, medicines, travel, and investigations. For years, we managed somehow using our own savings. We sold a small piece of land that we owned and gradually exhausted every resource available to us. My daughter also made sacrifices no sibling should have to make, choosing a government college despite performing well academically, because our priority had to be her brother’s treatment.<\/p>

Even after exhausting everything we owned, the transplant remained beyond our reach. This is the gap families facing a rare disease diagnosis fall into twice over, first in finding a doctor willing to treat a condition few have experience with, and then in affording a treatment that has no local benchmark for cost or funding support.<\/p><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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How we found Milaap<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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It was Dr. Dinesh Pendharkar at Sarvodaya Hospital, the first doctor to say yes after years of being turned away, who introduced us to Milaap. He realised that arranging money for the transplant would be impossible for our family and personally connected us with the Milaap team. They travelled to meet us, understood our situation, and helped us launch the fundraiser.<\/p>

It felt like we had been given our son back. Until then, every day felt hopeless because we didn’t know how we would continue treatment. The support from thousands of donors reminded us that we were not alone, and that our family mattered to people we had never met.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t

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\u201cIt reunited us with our son. Without this support, I don’t know where we would be today.\u201d<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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\u2014 Rajiv, Father<\/span><\/p>

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Where my son is today\n<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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Today, my son is doing very well. He has completed his treatment and is living a much healthier life. He continues to undergo regular medical check-ups and routine tests to monitor his recovery, but compared to what we went through over the last several years, his condition has improved tremendously.<\/p>

For a father who once worried every week about finding blood for his child, seeing him smile without fear is nothing short of a miracle. After sixteen years of uncertainty, we finally have something we had almost forgotten how to hold on to. Hope.<\/p><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t

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Struggling to fund a Bone Marrow Transplant or a rare disease diagnosis?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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Rare conditions often mean years of searching for the right doctor before treatment even begins, and by then, most families have already exhausted their savings. We help families reach a wider circle of support so treatment doesn’t have to wait any longer.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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Frequently asked questions<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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How much does a Bone Marrow Transplant cost in India?\n<\/h4>\t\t\t\t<\/div>\n\t\t\t\t
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Costs typically range from \u20b915 lakh to \u20b930 lakh or more, depending on the hospital, the type of transplant, and any complications during recovery. For rare conditions with little established treatment history in India, costs and timelines can be even harder to predict in advance.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Why do hospitals sometimes refuse to treat rare diseases?<\/h4>\t\t\t\t<\/div>\n\t\t\t\t
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Rare conditions often have limited research and clinical experience in a given country, so some hospitals may be hesitant to take on cases where the outcomes and treatment protocols are less established. Finding a specialist with direct experience, as this family eventually did, often takes years of searching across multiple hospitals.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Can crowdfunding cover the full cost of a Bone Marrow Transplant?<\/h4>\t\t\t\t<\/div>\n\t\t\t\t
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Many families combine crowdfunding with personal savings, loans, and any available government or employer support. It rarely covers every expense alone, but for treatment as costly as a transplant, it often makes the difference between starting on time and delaying further.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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How do I start a fundraiser for a Bone Marrow Transplant?<\/h4>\t\t\t\t<\/div>\n\t\t\t\t
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You typically need a diagnosis report, a treatment cost estimate from the hospital, and identity proof for the patient or the person raising funds on their behalf. Our team helps applicants gather and verify these documents before the fundraiser goes live.<\/p><\/div><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Story shared with permission · Written by Milaap<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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