A 16-year-old girl, who was bound to a wheelchair due to a rare genetic disorder, passed away on Monday, family sources said. Afra was suffering from spinal muscular atrophy and had last year appealed to the people to raise Rs 18 crore for saving her toddler brother, Mohammed, who is also suffering from the same disease. The disease affects the central nervous system and causes the wasting of muscles used for movement.
The 16-year-old was admitted to a private hospital in the last few days as she was not keeping well. The teenage girl had appealed to the world in July last year seeking help to raise money for her brother to procure a dose of Zolgensma, worth over Rs 18 crore, which is considered as one of the most expensive drugs in the world.
A medical treatment committee formed at the time received over Rs 46 crore contribution and the prescribed drug was procured. Mohammed was given the dose last August. The rest of the money was used for the treatment of two other children affected by the same disease.
Speaking to the media at Muhammedâ€™s house at Matool in Kannur in July last year, local legislator M Vijin had said that it was â€śunbelievableâ€ť that were able to raise such a huge sum from well-wishers. "We first formed a committee and then decided to appeal through social media, and with the help of media organisations, this campaign gathered momentum. We are still yet to come to terms with the success of raising Rs 18 crore in a week," he had said.
Afra was also undergoing treatment for spinal muscular atrophy.
The Kerala government, through a local body, had recently handed over a high-tech wheelchair to Afra.
Her last rites will be held at Matool central Juma Masjid Kabristan in Kannur.