Ayaansh, a girl who suffers from spinal muscular atrophy
HYDERABAD: Parents of two children from Hyderabad, suffering from spinal muscular atrophy (SMA) one of the few rare diseases that can be treated have turned to crowdfunding for financial help.
The cost of treatment, doctors say, is as high as Rs 22 crore (including Rs 16 crore for injection and Rs 6 crore for import duty).
Among those looking for support are three-year-old Ayaansh and seven-month-old Amayra Sheikh. Both have been detected with Type 1 SMA, which makes them almost completely immobile.
“Our baby is unable to even move or sit, but we are just thankful to have her around. Everyday is a struggle for us. I have started this fundraiser secretly without telling my family. I did not want to give any false hopes but I am praying every minute that some miracle happens and the fund target is met,” said Amayra’s father, Sheik Ali Edirush, an IT professional.