Kejriwal meets Delhi toddler with rare disorder

The 18-month-old is afflicted with spinal muscular atrophy — a genetic neuromuscular disorder that affects the nerve cells which control voluntary muscles

Chief minister Arvind Kejriwal on Tuesday met the family of a toddler suffering from a rare genetic disease, in Najafgharh.

Delhi chief minister Arvind Kejriwal. (PTI)

The 18-month-old is afflicted with spinal muscular atrophy (SMA) — a genetic neuromuscular disorder that affects the nerve cells which control voluntary muscles.

The boy was recently administered Zolgensma, a lifesaving drug imported from the US that reportedly costs ₹17.5 crore, the CM said, adding that the money was raised through crowd funding by AAP parliamentarians Sanjeev Arora and Sanjay Singh.

Kejriwal added that if the disease wasn’t treated within 24 months, the boy’s life could have been in danger. “With the efforts of AAP MPs Sanjeev Arora and Sanjay Singh and the support of the public, the injection has been administered to the boy. Now, he is gradually able to move his limbs. Many celebrities, leaders, and media organisations contributed to this noble cause,” he said.

The chief minister also thanked the US-based drug manufacturer, Novartis Gene Therapies, for agreeing to sell the drug for ₹10.5 crore, the amount that could be raised through crowd-funding. He also thanked the Centre for exempting the medicine from import duty.

Kejriwal sends off 76th batch of pilgrims

On Tuesday, Kejriwal presided over an event to see off the 76th batch of pilgrims under Mukhyamantri Teerth-Yatra Yojana, which will take senior citizens to Rameswaram and Madurai.

So far, 75 trains carrying 73,000 people have been dispatched under the scheme to visit religious sites in India. The 76th train will take 780 beneficiaries under the scheme, said Kejriwal.