HDK assures help for child battling rare disease

Union Minister H D Kumaraswamy has assured assistance for a two-year-old child suffering from a rare genetic disorder after the child’s parents appealed for help. Sai Chirag, a two-year-old boy from Shivar village in Mandya district, has been diagnosed with Spinal Muscular Atrophy (SMA), a rare and life-threatening condition. The child’s parents, Chetan and Bhargavi, met Kumaraswamy at VC Farm in Mandya and submitted a request seeking financial support for their son’s treatment.

According to the family, the treatment costs nearly ₹16 crore. They said there is a possibility of receiving about ₹1.75 crore in financial assistance from foreign donors, but a significant amount is still required to proceed with the treatment.

Responding to the appeal, Kumaraswamy assured that all possible support would be extended. He said efforts would be made to secure financial aid through the Prime Minister’s National Relief Fund and added that he would also extend personal assistance.

Spinal Muscular Atrophy is a rare genetic disorder that weakens the muscles by affecting the nervous system. The condition gradually reduces a child’s ability to move their limbs and, if untreated, can lead to severe complications including difficulty in sitting, walking and breathing.

Doctors treating Sai Chirag said the disease initially affected the child’s legs and is slowly spreading to the upper body. The weakness has now reached up to the waist, and medical experts have warned that if treatment is not provided within the next six months, it could affect the entire body.

The child’s parents have appealed to the public and authorities for immediate financial support to ensure timely treatment and prevent permanent disability.