Ahmedabad: In a bid to draw consideration of the government and to raise assets for a three-year-old kid determined to have spinal strong decay (SMA), an Ahmedabad-based enrolled trust will be taking out a 17-kilometer cycle rally on October 3.
SMA is a neurodegenerative disorder that progressively destroys motor neurons leading to loss of essential skeletal muscle activity, including speaking, breathing and swallowing.
Ayna Mansuri, who was diagnosed with the rare disease at VS Hospital in March 2019, will require the drug Risdiplam to be administered for the next 10 years.
Ayna’s father Junaid Mansuri, a marketing professional with limited income, says that treatment has not yet begun.
The cycle rally will start from Sidi Sayed mosque and will end at Sarkhej.
Daniyal Dilliwala, the founder of Genuine Help Foundation — the trust organising the cycle rally —said, “The cycle rally is to raise awareness among the government to subsidise the cost as the cost goes up with GST and other taxes. The drug costs Rs 40-50 lakh a year and has to be given for 10 years which results in a total cost of nearly Rs 5 crore. We have permission for 150 persons to participate in the rally and we have already received as many registrations. Registration requires payment of a minimum of Rs 500 with maximum permitted as much as a participant wishes.”