KOZHIKODE: A social media misinformation campaign has severely hampered fundraising efforts to save the lives of one-year-old triplets in Kozhikode. The young brothers — Ethan, David, and Oliver, children of Arun P D and Shalmi from Kallurutty in Omassery panchayat — were all diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic neuromuscular disorder.
To receive life-saving gene therapy before turning two years old, the family urgently needs to raise a total of Rs 50 crore. However, misleading messages falsely alleging that the family has already reached its financial goal are circulating widely, discouraging the public from contributing further.
“People are calling individually to check whether the news is true, and besides, our team members are going to various places for campaigning. People there are telling our volunteers, saying the fund is already fully achieved,” Albin Sebastian, a member of the local action committee, said.
Early in the 20-day drive, public enthusiasm drove daily contributions to high points of Rs 1.4 crore to Rs 1.5 crore. Recent false reports have caused daily intake to drop precipitously to between Rs 20 lakh and Rs 30 lakh. While total collections currently stand at approximately Rs 16.5 crore, the committee still urgently requires roughly Rs 33.5 crore to purchase the necessary medication.
A one-time gene therapy that costs crores
SMA, a rare genetic disorder, can be treated with a one-time gene therapy that costs several crores of rupees, offering hope to children affected by the life-threatening condition. The treatment, known as Zolgensma, is administered through a single intravenous infusion lasting approximately one hour. SMA affects the nerve cells responsible for controlling muscle movements. It causes progressive muscle weakness and can affect a child’s ability to sit, crawl, walk, swallow and breathe.
