Parents of spinal muscular atrophy patients meet Vij

Parents of patients suffering from spinal muscular atrophy (SMA), a rare genetic disorder, met Haryana health minister Anil Vij at his Ambala residence on Friday demanding affordable treatment for their children

Parents of patients suffering from spinal muscular atrophy (SMA), a rare genetic disorder, met Haryana health minister Anil Vij at his Ambala residence on Friday demanding affordable treatment for their children.

Haryana health minister Anil Vij (HT File)

The visitors from across state are demanding early treatment due to the deteriorating health of their children.

According to Sushila, a resident of Ambala’s Naraingarh and mother of Deepansh Rana who is suffering from Type-2 SMA, 21 patients in Haryana are battling the disease.

Sushila, who also represents Gurugram-based Cure SMA Foundation of India as its Haryana coordinator, said, “Through our representation, we’ve asked for permission to arrange a meeting with a private pharmaceutical firm that can provide the essential drug.”

Lalit Soni, of Jhajjar who is parent of a girl suffering from the disorder, said the treatment for a year costs nearly ₹70 lakh and they cannot afford it.

At Vij’s weekend ‘Janata Darbar’ in September last year, the parents were assured of free treatment on lines of hepatitis B and haemophilia patients. HT, in its report on March 28, 2021, had explained about the lethal disease found in one of 10,000 babies, in which muscles of the patient weaken with age.

Vij, in a statement, said his government is working to provide rebates for the treatment.

EMBED BOX

Vij to attend Global Investors Growth Summit in Dubai

CHANDIGARH Haryana home and health minister Anil Vij will participate in the upcoming three-day Global Investors Growth Summit in Dubai from on March 26. Sheikh Majid Rashid Al Mualla, a member of the royal family of the UAE has invited Vij to the summit. In a statement, Vij said the summit is being organised by the company of Sheikh Majid Rashid Al Mualla in which top business leaders of corporate sector from across globe will participate. He said over 100 fast-growing firms and billion-dollar companies will participate. He said business tycoons will be invited to invest in Haryana.