Actor Shekhar Suman, who is currently gearing up for the release of Sanjay Leela Bhansali’s Netflix series Heeramandi, has spoken at length about his older son, Aayush’s demise. The actor and his wife, Alka, lost Aayush when he was just 11 years old due to a rare disease called Endomyocardial fibrosis (EMF). EMF is a progressive disease of unknown origin (idiopathic) that may seriously affect the heart, as per National Organisation for Rare Disorders (NORD).
In an interview with ABP Live Entertainment, Shekhar got emotional talking about his late son’s disease. “EMF is a disease so rare that it affects only one in billions. As far as I know, there might be only three or four cases of it in India. Unfortunately, there is no known cure; the only treatment option is a heart transplant,” Shekhar said in the interview.
Shekhar revealed that when he got to know about Aayush’s EMF diagnosis, the doctors had told him that his child wouldn’t survive for more than eight months. He further said that his father, Phani Bhushan Prasad, who was a high-profile doctor, had saved countless lives through his medical practice, but “couldn’t save his grandson”.
“You can imagine the depth of our despair… We spared no expense in seeking the best medical care available worldwide. We sought solace in spirituality, visiting numerous places of worship, embracing Buddhism, and praying day and night. But there are miracles in life, things that are destined to happen, happen. Despite this, by some divine intervention, Ayush defied the odds and lived not just for eight months, but for four years. However, the looming reality of his eventual fate weighed heavily on us. I would spend sleepless nights gazing at his face, knowing that one day we would have to bid him farewell. Our sense of helplessness was overwhelming, our hearts shattered into pieces. We felt as though we were dying alongside him,” Shekhar recounted.
Recalling the day Aayush passed away, Shekhar said, “The day arrived when we had to admit him to the hospital. After receiving the doctor’s verdict, I cradled him in my arms. He was lifeless, he had left us. I kept lying with him, with his body, all night, all day, and cried a lot. Alka also cried a lot, but she eventually regained her composure. What greater anguish, sorrow, and agony is there for parents than to bid farewell to their child, to offer them to the flames, and to encircle the funeral pyre? We hoped time would ease the pain as it heals wounds, but instead, the pain intensified.”
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