In a heart-wrenching plea for help, the parents of Hitaishi, a baby girl from Andhra Pradesh’s Guntur, are facing the daunting reality of funding a life-saving treatment for their child’s rare disease. Gayatri and Pritam, both software employees originally from Guntur and Rajamundry respectively, were overjoyed with the arrival of their daughter, only to be devastated by the discovery of her illness soon after.
Hitaishi was diagnosed with Spinal Muscular Atrophy (SMA), a severe genetic condition affecting the spine, which inhibits motor neuron function essential for basic movements like sitting, swallowing, and even breathing. Doctors at Baptist Hospital in Bengaluru confirmed the diagnosis, stressing the urgency of treatment.
The prescribed remedy, an injection of Zolgensma, comes with a staggering price tag of Rs 16 crore. This injection is crucial for halting the progression of SMA, a condition that can be fatal if untreated early. With treatment available in major cities like Bengaluru, Hyderabad, Mumbai, and Delhi, Hitaishi’s parents are desperately seeking financial aid to afford the imported medication.
SMA is a rare genetic disease affecting approximately one in 10,000 people, explained medical experts familiar with the case. Without intervention, the disease progressively weakens muscles, severely impacting a child’s ability to move and breathe. Injections and medications necessary for treating this disease are being imported from abroad.
Children aged 8-9 months are classified as type-1 SMA, while those between 9 and 18 months fall into type-2. SMA type 1 results from a defect in the SMN1 gene, crucial for producing a protein vital to motor neuron survival. These neurons, responsible for muscle control, degenerate without sufficient protein, leading to muscle weakness. Consequently, affected children experience difficulties in walking, sitting, swallowing, and breathing, and have impaired function in their eyes and hands.
The financial burden has overwhelmed the middle-class family, prompting them to reach out to government agencies and potential donors for assistance. Despite their best efforts, Gayatri and Pritam find themselves in a race against time to secure funds and save their daughter’s life.
This disease has placed an immense emotional and financial strain on their family and they now implore those who can help them in any way possible. As the couple navigates this harrowing ordeal, they remain hopeful for the generosity and compassion of strangers who can provide a lifeline for their precious daughter.
The film Saindhav released in December 2023, directed by Sailesh Kolanu, was around similar lines where the protagonist’s child suffered from the same ailment.
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