Help this farmer save his daughter’s life from Pompe disease- a rare condition

Four-year-old Baavanya, from the small village of Malladagudda in Raichur district's Sindhanur Taluk, faces a daunting battle against Pompe disease, a rare genetic disorder. Her parents, residents of this remote area, were blindsided by the diagnosis. At just seven months old, Baavanya's severe breathlessness led to a hospital admission, where doctors initially offered little hope, predicting she wouldn't survive beyond a year. Driven by desperation, her parents embarked on a grueling journey, seeking answers from hospitals across various regions. Finally, a genetic test in Bengaluru revealed the devastating truth: Pompe disease. The life-sustaining medication required was quite expensive, casting a shadow of despair over the family. Thankfully she got treatment under National Policy for Rare disease (NPRD 2021) at Indira Gandhi Institute of Child Health - Center of excellence (COE) in Bengaluru. The Rs 50 lakhs under the policy was sufficient only for a year. Regular trips to Bengaluru became a routine, and Baavanya responded well to the therapy. However, this relief was tragically short-lived. Now the treatment stopped Six Months Back and her health condition started deteriorating, leaving the family stranded. The once-vibrant child now sits weak, her energy sapped, her future uncertain. Her mother, a homemaker, and her father, a struggling farmer, are powerless to afford the essential medicine, their last beacon of hope extinguished. They watch their daughter's silent suffering, knowing this treatment is her only chance at survival. While the hope remains that the government will swiftly reverse its decision, Baavanya's critical condition cannot endure such delays. Every moment without treatment diminishes her chance at a healthy future. Therefore, we, as a compassionate society, must step forward. Let us restore her faith in humanity by collectively providing the means for her life-sustaining medication. Your generous donations can ensure Baavanya receives the treatment she desperately needs, offering her a chance to reclaim her energy and her future.