Funds being raised for treatment of nine-month-old Usman
KATHMANDU: AUGUST 15 – Funds are being raised for the treatment of Mohammad Usman Ali, a nine-month-old boy suffering from a rare disease called spinal muscular atrophy (SMA). The victim’s family has appealed for financial help as the treatment is very expensive.
Accordingly, the Lions Club of Shuklagandaki Town has handed over Rs. 50,000 for the child’s treatment. Chairman of the club Bishnu Bahadur Rana informed that the amount was provided by the club as it is a human religion to help in times of distress. Similarly, the Nepal Muslim Ijte mothers’ group in Shuklagandaki-5 has provided Rs. 45,000 for the child’s treatment.
According to the family, the baby showed symptoms of SMA within three months of birth. Usman’s family had treated him at various hospitals in Pokhara for the past three months but he was taken to Kanti Children’s Hospital at the age of eight months. He was treated at the hospital under the supervision of pediatrician Dr Bina Prajapati.
A blood test in India confirmed Spinal muscular atrophy. Dr. Manandhar has advised that the life of the patient can be saved by using the medicine produced by Novartis Gene Therapies, which is said to cost more than Rs 250 million. This disease is rarely confirmed in Nepal. Before Usman, this type of disease was seen in 22-month-old Siona Shrestha of Bhairahawa in Nepal. She is currently undergoing treatment in Dubai.
Meanwhile, Muslim youths in Damauli have also started a fundraising campaign to save Usman. Accordingly, Rs. 25,150 has been collected from Nuri Hanafi Jame Mosque in Byas Municipality-4. “Assistance has also started to be mobilized through various individuals and organizations in Damauli,” local youth Mohammad Gaffar (Sudip) said.
What is spinal muscular atrophy?
Spinal muscular atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle).
Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells. Atrophy is the medical term for getting smaller, which is what generally happens to muscles when they’re not stimulated by nerve cells.
SMA involves the loss of nerve cells called motor neurons in the spinal cord and is classified as a motor neuron disease.
