Hyderabad: UAE-based, Syed Asgar Ali who is from Hyderabad is seeking help from the public for the treatment of his 8-year-old son, Syed Arhaam Ali, who is suffering from SMA Type-2 (Spinal Muscular Atrophy), Arhaam cannot walk or do anything that children do of his age.
SMA is a rare genetic progressive neuromuscular disease. It is part of a group of hereditary diseases that gradually destroys the motor neurons – nerve cells in the brain stem and spinal cord that control essential skeletal and muscle movements that control actions such as speaking, walking, breathing, and swallowing. A malfunction in motor neurons leads to muscle weakness and atrophy.
According to Syed Asghar Ali, “There was no medication for this condition at that time. Then doctor advised us to start with physiotherapy, but it is a progressive disease and physiotherapy alone will not help,” Asghar Ali said. Asghar Ali and his wife are trying their best to take care of Arhaam as SMA kids have many problems as they cannot stand and walk. They also have breathing problems scoliosis.
They also appealed to Telangana’s chief minister, K Chandrasekhar Rao to take a personal interest in all the SMA patients and help them financially.
According to Arhaam’s parents, the FDA has approved a medicine called EVRYSDI for SMA kids which is launched by ROCHE. “This medicine is also available in India but it is very expensive and we need to take this for a lifetime. Each bottle of EVRYSDI is 200 ml and can be used for 12 days and it costs Rs 6.2 lakhs. So for a year it costs 74 lakhs Rupees. So, we decided to crowdfund for medicine.
For further details, and verification please contact,
Syed Asgar Ali, Dubai (+971 524228805) WhatsApp
Syed Asgar Ali’s Brother (Syed Mustaq Ali +91 9052663979)
Note: The above story is published on a humanitarian basis/request, and Hyderabad Post has no relations with the above-mentioned persons.
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