PALAKKAD: Sarang Menon and Adithi Nair looked on helplessly as their 15-month-old son Nirvan struggled to sit up. The boy, diagnosed with type-II spinal muscular atrophy (SMA), is likely to not walk as the genetic disorder has rendered his muscles without strength. This is a rare disease, seen in only one person per 80,000.
Zolgensma, a one-time gene replacement therapy is perhaps the only hope. But at Rs 17.5 crore, it is prohibitive for the Koottanad-based Menon, who works in Merchant Navy.
The disease was diagnosed on January 13. Since then, the duo had been busy, seeking help from all quarters. Two days ago, they had met Health Minister Veena George in Thiruvananthapuram, who, on learning the boy’s plight, posted about it on her official Facebook page.
The couple has collected Rs 2.57 crore so far through online platforms Milaap and Impact, but the required amount remains out of reach.
Those who wish to contribute can deposit money in account number: 2223330071555889. RBL Bank. IFSC code RATN0VAAPIS (The digit after N is 0). Address and mobile number: Sarang Menon, Malalath (house), Koottanad (post), Palakkad, Kerala. Mobile 9895845869.