Family battles with rare progeria disease

Family battles with rare progeria disease

The brothers live at a charity home in Kolkata, where their caretakers hide them from the painful and uncomfortable stares of onlookers. People think they are some kind of aliens, their father Bisul Khan says.

Progeria is a rare disorder passed to a child at birth by parents carrying the defective gene. One in about eight million people suffers from it. The affected child develops the look of a bird with an oversized bald head on a dwarfed body. The child also ages three times faster than does a normal human being.

Ikramul and Ali are probably the only example in the world where more than one member of a family suffers from the disorder, also called the rapid ageing or Hutchinson-Gilford projeria syndrome.

Ikramul and Ali were born to Bisul Khan and Razia Khatoon from Bihar.

They were seven siblings in all, five of whom had the full-blown condition. Of them Guriya, Rehana and Robina died when they turned 17, 24 and 13 respectively. Ikramul and Ali lived on.

In fact, Ikramul’s resilience has surprised even his doctor. Ikramul is 23 now. His pediatrician Chandan Chattopadhyay says those affected by progeria usually do not live beyond 17.

The two brothers are, however, full of life. They probably do not know of Amitabh Bachchan yet, and the bond that he has struck with them through Paa.

They, however, have gotten to know and adore Salman Khan from his film Wanted, which they went to see at an upmarket theatre in Kolkata.

Liked the story?

  • 0

    Happy
  • 0

    Amused
  • 0

    Sad
  • 0

    Frustrated
  • 0

    Angry