Delhi CM Kejriwal meets baby boy suffering from rare genetic disorder

Delhi Chief Minister Arvind Kejriwal made a compassionate visit to Najafgarh on Tuesday, where he met with an 18-month-old boy afflicted by a rare genetic ailment. The family of the young child had successfully gathered funds for his treatment through a crowdfunding initiative.

The little boy, named Kanav, is grappling with spinal muscular atrophy (SMA), an uncommon genetic neuromuscular disorder that impacts the nerve cells responsible for regulating voluntary muscles, known as motor neurons.

Without medical intervention, this condition progressively weakens the muscles, eventually severely limiting all muscular functions, including those vital for digestion, cardiac muscle contractions, pulmonary function, and even basic limb mobility.

As outlined by Chief Minister Kejriwal, the treatment for SMA necessitates a specialized injection, the cost of which amounts to Rs 17.5 crore.

Kejriwal shared, “This is an exceedingly rare genetic disorder, with only nine documented cases across the country. Kanav’s case marks the first occurrence of this disease in Delhi. The child’s parents reached out to AAP MP Sanjiv Arora, who initiated a crowdfunding campaign to secure the required treatment.”

Remarkably, the crowdfunding endeavor successfully raised a significant sum of Rs 10.5 crore, which was subsequently employed to procure the vital medication from the United States. Subsequent to the treatment, Kanav’s condition witnessed a remarkable improvement, allowing him to regain the ability to sit and move his limbs.

The Chief Minister expressed his heartfelt gratitude to all those who generously contributed to this noble cause, which included several celebrities and Members of Parliament. He also extended his appreciation to the American pharmaceutical company that accommodated the sale of the medication at the reduced cost of Rs 10.5 crore.

In addition, Kejriwal acknowledged the Government of India for their decision to exempt the import duty on this crucial medicine, which facilitated the expeditious acquisition and administration of the treatment.

This heartwarming story exemplifies the power of collective compassion and community support, as well as the impact of dedicated individuals and organizations coming together to make a life-altering difference in the face of adversity.

(With PTI inputs)