Desperate Father Appeals to PM Modi for Financial Lifeline for Child's Rare Disease

So I have made a humble plea to Prime Minister Shri Narendra Modi ji to save the life of my son by extending this financial assistance, Mohd Kidwai said.The AIIMS prescription, detailing his sons medical condition and treatment, said that children with DMD can walk without support but they become immobile by the age of 12 to 14 years and develop cardiac and respiratory complications in the future.Though the drug has been approved under accelerated approval based on lab results by the FDA US in June 2023, the long-term safety and efficacy of the drug is not proven.

Unable to afford the medical treatment of his five-year-old son, who is suffering from a rare disease, Mohammad Fazal Yaseen Kidwai, a resident of Uttar Pradesh, has made a plea to Prime Minister Narendra Modi for financial assistance.

Mohd Kidwai, who works as a medical representative in Lucknow and is a resident of Uttar Pradesh's Barabanki, said in his letter that his son, Yunus Fazal Yaseen Kidwai, was diagnosed with a rare genetic disorder known as Duchene Muscular Dystrophy (DMD) in August 2023. The cost of its treatment is about Rs 27 crore, he said.

"This treatment was earlier possible only in the US. But a ray of hope came after I approached AIIMS, New Delhi and requested for a prescription which stated that they are willing to treat Master Yunus provided the financial assistance is approved. So I have made a humble plea to Prime Minister Shri Narendra Modi ji to save the life of my son by extending this financial assistance," Mohd Kidwai said.

The AIIMS prescription, detailing his son's medical condition and treatment, said that children with DMD can walk without support but they become immobile by the age of 12 to 14 years and develop cardiac and respiratory complications in the future.

"Though the drug has been approved under accelerated approval based on lab results by the FDA (US) in June 2023, the long-term safety and efficacy of the drug is not proven. Studies are ongoing and results are awaited," Dr Sheffali Gulati, professor, faculty incharge, Neuromuscular Clinic and Child Neurology Division, Department of Pediatrics, AIIMS, New Delhi, said.

According to doctors, the muscle keeps getting fragile in DMD and poses a life-threatening challenge.

Mohd Kidwai, requesting people to like #yunusfightsdmd on Instagram, said that he is making every possible effort to save his son's life and writing to celebrities from various walks of life. However, he hasn't been able to raise the required funds for the treatment as of now.

"For the past three months, I have been making all possible efforts. I tried to crowdfund by running online campaigns, writing to politicians, meeting senior officials and leaders but help hasn't come from any quarter yet," Mohd Kidwai said.

He added, "Besides asking for help from several MPs, I requested them to write to the prime minister on my behalf and I am grateful to them that they did it. I have pinned all my hopes on the PM." JP

(This story has not been edited by Devdiscourse staff and is auto-generated from a syndicated feed.)