An infant diagnosed with the rare disease, spinal muscular atrophy (SMA), whose parents and relatives had launched an active social media campaign to collect funds for his treatment, died at the Government Medical College Hospital late on Tuesday night.
According to sources, Imran Ahmed, son of Arif, a native of Perinthalmanna in Malappuram district, suffered a cardiac arrest while he was on ventilator support at the Institute for Maternal and Child Health attached to the hospital.
Imran was taken to doctors after it was noticed that he could not move his hands even two-three weeks after birth. He was initially admitted to a private hospital and then to the medical college hospital. He was diagnosed with SMA, a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement.
When it was revealed that his treatment would cost around ₹18 crore, Arif had contacted the office of the Health Minister, who promised all help.
Later Arif approached the Kerala High Court, seeking a directive to the government for financial assistance. Though the government was asked to file an affidavit by June 28, it was reportedly not given.
In the meantime, the campaign launched by Arif and friends evoked an enormous response from within the State and abroad. A local people’s committee headed by people’s representatives too had been formed. Close to ₹16 crore collected through crowdfunding as deposited in a bank account opened for the purpose. The news of his death came when the local youth organisations were planning to hold a ‘payasam festival’ to collect more money. His last rites were held at a mosque in Valambur near Perinthalmanna.
Apart from his father, Imran is survived by his mother, Raneesa Thasni, and sister Diyana Fathima.
Infant diagnosed with rare disease dead