5-month-old girl from Ujjain diagnosed with rare spinal condition:Undergoing treatment at AIIMS Bhopal; family seeks CM Yadav’s help for ₹15 cr injection

A five-month-old girl from Ujjain, Kashi Dubey Puriya, daughter of a doctor couple, is suffering from Spinal Muscular Atrophy (SMA) Type-1, a severe genetic condition. Her treatment requires gene therapy costing about ₹15 crore, which is not available in India. The family has started a fundraiser and appealed for help, including support from Chief Minister Mohan Yadav. Currently, she is under treatment at AIIMS Bhopal under Dr Bhavna Digre, HOD Medicine, and some medicines have been started. However, the effective treatment is the gene therapy injection Zolgensma, made by Valtish, which must be imported from abroad and costs about ₹15 crore. No normal movement observed in the limbs Kashi is the daughter of Dr Rohit Dubey and Dr Prakriti from Kashi Ujjain. They stated that shortly after Kashi’s birth, normal movement was not observed in her hands and feet. Initially, physiotherapy was done, but there was no improvement. After this, she was examined by specialist doctors in Bhopal, where SMA Type-1 was clinically suspected. Later, the blood test report confirmed the disease. Muscles gradually weaken According to doctors, SMA Type-1 is a severe genetic disorder in which muscles gradually weaken. If not treated in time, this disease can prove fatal. Only 30 lakhs raised so far The family stated that only about 30 lakh rupees have been raised so far. For this, they have started an online fundraiser and are trying to reach people through various means. Recently, a charity show was also organised, but a large amount is still needed. Given the shortage of time, the family is continuously striving to make gene therapy available as soon as possible, because any delay could worsen the child’s condition. The family has appealed for help from society, social organisations, and the government administration. Plea for help Kashi’s mother, Dr. Prakriti, says, Our daughter Kashi has SMA Type-1, which is a very serious disease. Doctors have stated gene therapy as the only effective treatment, which costs around 15 crore rupees. We are trying our best, but time is very short. I appeal to everyone with folded hands to help our child so that she can get timely treatment. Grandmother Kusum Sisodia’s eyes are swelling up with tears. She says, We never thought our granddaughter would have such a disease. Seeing her condition, I can’t sleep all night. We just want her to get treated as soon as possible. I request everyone to help us. Grandfather Prem Sisodia, with folded hands, appeals to the public for his granddaughter to provide as much help as possible so that she can get treatment quickly and live a healthy life.