Odisha boy with rare disorder awaits miracle treatment

Bhubaneswar: No one would have thought that a five-year-old boy would be facing such obstacles in his life from such a tender age.

Born to Mamata and Ramachandra Naik, Kanha who is a five-year-old boy of Gayaganda village under Jagannath Prasad block in Ganjam district has to bear the burden of an ‘incurable’ disease that has even baffled doctors.

According to doctors who diagnosed him, Kanha is suffering from a kind of genetic skin disorder leading to excessive hair growth and development of excess flab of flesh covering his entire face and most parts of his upper torso along with parts of legs.

“At times he is teased by his friends while many others do not come near him. Even his school teachers don’t admit him to classes, so we have to teach him in our home,” his tearful mother said.

With three children and Kanha being the eldest, his parents are having a tough time to sustain family. His father is a daily wage labourer and being the sole bread earner, it has become impossible for them to even think about his treatment.

“His disorder was quite meagre during his birth and was just like black pigmentation on skin, but eventually it grew bigger as he started aging,” his father said.

After being contacted by the OTV team, Bhanjanagar Sub-collector made all necessary arrangements for Kanha’s diagnosis at Berhampur MKCG hospital.

Jitu Das, HOD of Plastic Surgery said “With help of some modern therapy, parts of excessive growth on the boy’s face can be operated to give him a bit of relief and assistance for important functions like eating. But it won’t be able to restore his face.”

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“The disease is related to a rare disorder in DNA configuration and as far as I know we don’t have dedicated treatment. Many a times we have treated patients with similar disorder but at a much lower scale,” he said.

However, many believe that after the miraculous treatment of Jaga-Kalia, the famous conjoined twins from Kandhamal, nothing is impossible and if some ultra modern treatment with the help from government can be provided, then the boy might get a new lease of life.