2.5-yr-old boy with rare disease to get injection worth Rs 17 Crore
Jaipur: Two-and-a-half-yearold Arjun, suffering from Spinal Muscular Atrophy, a rare disease, is being given gene therapy at JK Lone Hospital under the guidance of Dr Priyanshu Mathur, Associate Professor of the hospital. Other team members include Dr Priyanshu Mathur, Dr Gayatri, Dr Lokesh and Dr Manisha. The problem faced by Arjun’s family members in arranging the therapy amount was highlighted by First India.
After this, on the initiative of Education Minister Madan Dilawar and IAS officer Krishna Kunal, Ashish Modi and the entire education department decided to help him. Money was raised through crowdfunding.
The medicine, zolgensma, which costs Rs 17 crore was made available at 50% discount. According to doctors, Europe-manufactured zolgensma is imported for patients only on the approval of CDSCO.