On a limb and a prayer: Living with a rare disorder

Photos by Saumya Khandelwal


Text by B. Sundaresan and Saumya Khandelwal


Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost.

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Akshaj suffers from Klippel Trenaunay Syndrome (KTS), a rare genetic disorder whose cases arguably vary between 1 or 2 in 100,000. The right side of his body, from his chest to his legs, is larger than the rest of the body.

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“KTS is a congenial malformation affecting the lower limbs,” said Kumud Rai, director of vascular surgery at Max Super Specialty Hospital. Those who suffer from the condition have visible varicose veins on their legs and thighs, discrepancy in the length of their limbs as well as dark pigmentation on the legs. Dr Rai explains that there are no known reasons why children are born with KTS.

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“It’s a rare disease,” says Dr Rai. In his entire career, he has not seen more than 20-22 cases.

Akshaj's parents, Shruti and Ankur Khandelwal have visited many doctors in reputed institutes in Delhi and other cities, but mostly in vain. Though this has exhausted the young middle-class couple physically, they are still optimistic.

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‘If God has put us in a situation like this, he will also show us a solution,’ says Shruti.

Their optimism helps Akshaj sail through the days. Shruti concocts stories to explain the world to the little boy – stories that mix a dose of realism with the fantastic.

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Akshaj himself is an island of calm. When one of his legs started bleeding suddenly, the hospital staff and the doctors panicked. But the boy responded: "Nothing happened, it’s alright. I am a Superman". On another day, when his mother was looking distraught, Akshaj pacified her, "You don’t worry about me, you take care of yourself."

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This calmness doesn’t fail to take Shruti by surprise. At home, nestled between toys, Akshaj works hard at his lessons with his mother. She helps him, showing him how to cope with the situation.

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Shruti, on the other hand, has started to worry. Akshaj’s inquisitiveness will multiply as he grows and his attention might turn to the disorder that sets him apart. The stories are meant for this purpose. "You have a gift no one else has," Shruti assures Akshaj, but the true meaning of these words may sink in much later in his tender mind.

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As of now, Akshaj explains that his leg is deformed since birth. ‘Janam se hai,’ he says. One of his friends has come to think that ‘Jaman se’ is the name of his right leg.

Meanwhile, Ankur struggles to make ends meet. He has begun to feel like he is merely responding to the vagaries of life.

He spends four hours of the day commuting to and from his workplace, where he works an 8-hour shift. The rest of day is spent meeting doctors and hunting for a new house, among other things. One day, a stressed Ankur used shaving cream to brush his teeth. But for both Ankur and Shruti, the hardships have a purpose. It is all meant for Avi, as Akshaj is fondly called.

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Web Producer: Abhinash Kumar Jha