Duchenne Muscular Dystrophy (DMD) is a rare genetic disease in children, the cost of treatment of which is Rs 27 crore

Duchenne muscular dystrophy (DMD) is a rare and incurable genetic disease that primarily affects boys. The disease weakens the muscles gradually, making it difficult for the patient to walk, breathe and ultimately survive. One out of every 3500 male births in India is affected by this disease. The treatment is so expensive that it is beyond the reach of normal families. One such touching story is of Harpreet Singh and his wife, residents of Jandiala Guru in Amritsar, who are struggling day and night to save their 9-year-old son Ishmeet. Ishmeet has DMD and needs Rs 27 crore for his treatment, an amount that seems impossible for any normal family. Harpreet Singh is a soldier in the Indian Army and his wife's life was normal until their only son Ishmeet showed some unusual symptoms. When Ishmeet was four years old, his parents noticed that he could not walk properly, fell repeatedly, and could not run like other children. At first they thought it was general weakness, but when the symptoms began to increase, they took her to local doctors. After several tests and rounds of hospitals, doctors at Delhi's AIIMS confirmed that Ishmeet is suffering from DMD. Hearing this news, the ground slipped under the feet of Harpreet and his wife. DMD is a genetic disorder caused by a mutation in the dystrophin gene. This gene produces the dystrophin protein in the body, which is necessary to keep the muscles strong. The lack of this protein weakens the muscles and gradually destroys them. The average age of children with DMD ranges from 11 to 21 years and most patients become wheelchair dependent by the end of adolescence. When Harpreet came to know that his son's treatment was possible, a ray of hope lit up his face. Doctors at AIIMS said a gene therapy is available in the US in which DMD can be treated with a special injection Zolgensma (or an equivalent drug). Doctors assured that this injection can make Ishmeet completely healthy. But along with this hope, a truth also came out which frustrated the family. The cost of the injection is Rs 27 crore. This amount of Rs 27 crore is unimaginable for a middle-class family. Harpreet Singh tried to sell all his deposits, land, and other resources, but even this raised only a small part of the amount. There is no affordable treatment available for DMD in India and drugs like steroids can only control the symptoms for some time, which also has serious side effects. Harpreet and his wife did not give up. He resorted to crowdfunding to save his son. Through social media, the local community and various organisations, he appealed to the people for help. Standing outside Sri Harimandir Sahib, he pleaded so that more and more people could hear his story. His hard work paid off and so far about two crore rupees have been collected. But still twenty five crore rupees are required and time is passing fast.