By Haziq Qadri @haziq_qadri
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Videographer / director: Shams Qari
Producer: Haziq Qadri, Ruby Coote
Editor: Sonia Estal
Three-year-old Akshaj Khandelwal from Dwarka in Delhi has been diagnosed with Klippel-Trenaunay Syndrome (KTS), a rare condition that has caused excessive growth on the right side of his body.
The three symptoms associated with the syndrome, which affects one or two in 100,000 people, are port wine stains, large varicose veins and hypertrophy (extra growth) of one limb.
The excessive growth of Akshaj’s right leg causes him difficulty with walking but the toddler, unaware of the medical nature of his condition, believes his larger leg is a gift from God and he is lucky to have it.
Akshaj explained: “I have a big leg since birth. It’s a God gift to me. God has made me a special kid. All my friends have normal legs. They aren’t special.”
Worried dad, Ankur Khandelwal believes that Akshaj is currently too young to be told the details about his condition.
He said: “My son doesn’t know what the condition is. We don’t want to make him feel bad. He believes having a big leg makes him a superman. He is too young to know his problems.
“He cannot go to school on his own. It’s a very challenging thing to send him to the school. Before joining the school we had to make sure how he would explain his condition to his friends.”
Ankur is concerned about the reaction from Akshaj’s schoolmates and worries about his son, their only child, being bullied as he gets older.
He explained: “We make sure that he takes his condition positively. I told him not to fight your friends if they bully you. But this can’t happen always. Today he is listening but tomorrow he won’t. That’s my only concern.”
Akshaj’s condition has baffled the doctors in New Delhi. Doctor’s in Fortis Hospital say it’s a rare condition and is unlikely to be treated successfully.
Doctor Krishan Chugh, HoD Pediatrics at Fortis Hospital in Gurgaon said: “Klippel Trenaunay Syndrome is a form of malformation where the veins are not properly formed. It’s a disorder found mainly among children.
“Akshaj has a tendency to bleed from his intestines and investigations have shown that intestinal blood supply is not normal. The veins are over distended and they will have a tendency to bleed.
“Strictly speaking there is nothing that will work wonders. We’re not trying to reverse anything as it’s probably not possible."
Heartbroken dad Ankur says people often maintain a distance from Akshaj, as they fear his condition might harm their kids.
He said: “Whenever we take him to the market, some people try to avoid him. They fear getting infected.”
His distraught parents have visited almost all the hospitals in New Delhi and have returned without any help.
Ankur said: “Initially, it wasn’t that much when he was born, but his right side is continuously growing and the left one, the normal one, is getting weak.
"One condition that he could also face is that his mobility could stop completely, which is a very painful issue for us.
Mum Shruti Khandelwal said: “Akshaj cannot walk properly. He can’t even sit without a proper support. It’s like his right leg is tied with five heavy stones. His leg pains and bleeds if he walks more than a few steps.”
Akshaj’s devoted parents will continue to seek a cure for their son’s condition but admit that it’s painful watching their son’s suffering.
Shruti said: “We have met all the doctors in Delhi but till now we haven’t able to find any treatment. His health is falling as he grows.
“The size of his leg is increasing day by day and that’s what breaks my heart".
“Negativity always creeps in very fast but we still try and overcome it".