Race Against Time: Parents Struggle to Fund Rs 16 Crore Treatment for Baby’s Rare Disorder

The Child is diagnosed with Spinal Muscular Atrophy (SMA), a severe genetic disease that affects the spine and impairs motor neuron activity
Hitaishi was identified as having Spinal Muscular Atrophy (SMA), a severe genetic disorder affecting the spine that impairs the function of motor neurons. (Representational image: Unsplash)
Hitaishi was identified as having Spinal Muscular Atrophy (SMA), a severe genetic disorder affecting the spine that impairs the function of motor neurons. (Representational image: Unsplash)

Parents of Hitaishi, a baby girl from Guntur, Andhra Pradesh, have made a heartbreaking plea for help, realizing how difficult it will be to pay for a life-saving treatment for their child's rare disease. When their daughter arrived, Gayatri and Pritam, who work as software engineers and are originally from Guntur and Rajahmundry, respectively, were joyful. However, they were horrified to learn of their daughter's sickness shortly after.

Hitaishi was identified as having Spinal Muscular Atrophy (SMA), a severe genetic disorder affecting the spine that impairs the function of motor neurons necessary for even the most basic actions, such as breathing, eating, and sitting. Doctors at Baptist Hospital in Bengaluru confirmed the diagnosis and emphasized the need for prompt treatment.

The injection of Zolgensma is essential for stopping the spread of SMA, a rare genetic disease that can be lethal if left untreated. (Representational image: Unsplash)
The injection of Zolgensma is essential for stopping the spread of SMA, a rare genetic disease that can be lethal if left untreated. (Representational image: Unsplash)
Hitaishi was identified as having Spinal Muscular Atrophy (SMA), a severe genetic disorder affecting the spine that impairs the function of motor neurons. (Representational image: Unsplash)
Private Complaint of Medical Negligence Dismissed by Jharkhand HC Due to Insufficient Evidence

The injection of Zolgensma, the recommended treatment, has a staggering price tag of Rs 16 crore. This injection is essential for stopping the spread of SMA, a disease that can be lethal if left untreated. Although large cities like Bengaluru, Hyderabad, Mumbai, and Delhi offer treatment, Hitaishi's parents are in dire need of financial assistance to pay for the imported medication.

According to medical professionals familiar with the case, SMA is a rare hereditary condition that affects about one in 10,000 people. In the absence of treatment, the disease gradually weakens muscles, making it extremely difficult for a kid to move and breathe. Foreign injections and drugs are being imported to treat this illness.

Type-1 SMA refers to children 8 to 9 months of age, while type-2 refers to those 9 to 18 months of age. An SMN1 gene mutation, which is essential for the production of a protein crucial to motor neuron survival, causes SMA type 1. The weakness of the muscles results from the degeneration of these neurons, which control muscular contraction. Children that are impacted therefore have trouble breathing, walking, sitting, and swallowing, and have a poor function in their hands and eyes.

The middle-class family is so in debt that they are contacting possible donors and government organizations to ask for help. Despite their greatest attempts, Gayatri and Pritam are forced to work quickly to raise the money necessary to save their daughter's life.

Their family is currently in desperate need of any assistance, as this illness has caused them great emotional and financial hardship. The couple is optimistic that people will be kind and compassionate enough to offer their lovely daughter a lifeline as they navigate through this traumatic experience.

Sailesh Kolanu's film Saindhav, which debuted in December 2023, followed a similar plot and had a protagonist whose child suffered from a similar illness.

(Input from various sources)

(Rehash/Priyanka Pandey/MSM)

Hitaishi was identified as having Spinal Muscular Atrophy (SMA), a severe genetic disorder affecting the spine that impairs the function of motor neurons. (Representational image: Unsplash)
Private Complaint of Medical Negligence Dismissed by Jharkhand HC Due to Insufficient Evidence
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