A Rare Disease Has Stolen 5YO Sufiyan’s Childhood

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    “When Sufiyan was born, he weighed only 1.5 kg. Every time he ate, he would pass stools 10-15 times a day. Whatever went inside his body came out again. We went to every possible doctor, but no one could tell us what was wrong. We watched helplessly as our baby kept losing weight and strength. But now, the diagnosis is threatening to take his life, threatening to take our baby away from us.” - Sakina, mother

    A rare disease stole his childhood

    After years of unanswered questions, tests finally revealed the truth- Sufiyan had Shwachman-Diamond Syndrome, a rare genetic disorder that affects the bone marrow and digestive system. The doctors said there was only one cure- a bone marrow transplant, and that too, at a huge cost.

    “The doctors told us that anything could happen at any time. For two years, we lived in fear, praying each day that he would survive one more night, while we put together every penny we could for his treatment,” - Sakina, mother

    Things got worse, he was diagnosed with cancer

    In June last year, Sufiyan started bleeding from his nose, mouth, and gums. His tiny body was covered in blue patches, and he was burning with fever. Tests revealed that he was now also battling blood cancer.

    “Due to the disease, Sufiyan hasn’t achieved many milestones that other children his age have. He can’t speak properly, and his weight is not even that of a two-year-old. Because of his illness, he couldn’t even go to school and socialise. All he has seen ever since his birth is hospitals. Every 15 days, he gets a blood transfusion, and every week, platelets. In between, he is also getting his chemotherapy. He’s only five… but he’s fighting for his life.” - Salamat, father

    They can’t afford to save him, you can help

    The family has already spent everything they had. Sufiyan’s treatment and transfusions have drained all their savings. Now, they need ₹25 lakh for a bone marrow transplant, the only hope of saving his life.

    “We are ready to do anything for him, but we have nothing left. Every rupee goes into his blood and platelets. I just want my son to live, to play, to grow up. Please help us save him.” - Salamat, father

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