If little Akshaj Khandelwal tries to walk more than a few steps his limb bleeds – and it’s growing day by day.
The tot has the genetic disorder Klippel-Trenaunay Syndrome (KTS), which affects one in 100,000 people, and can’t go to school alone.
And unaware that it’s a medical condition, he believes his huge leg is a gift, it makes him a “superman” and he is lucky to have it.
People steer clear for fear of being infected and his family worry he will be bullied by other kids as he grows older.
Dad Ankur, from Delhi, India, thinks his boy is still too young to be told the truth about his leg – for which there is no cure.
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 very challenging.
“Before joining school we had to make sure how he would explain his condition to his friends.
“We make sure he takes his condition positively. I told him, don’t 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.”
His distraught parents have visited almost every hospital in the area but have not got help.
Doctors at Fortis Hospital remain confused about the condition and say it is unlikely he will be treated successfully.
KTS affects the development of blood vessels, soft tissues and bones.
It has three main side effects: port wine stains, overgrown bones – particularly limbs – and varicose veins.
Dr Krishan Chugh, head of paediatrics, said: “KTS 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.”
Akshaj’s devoted parents admit it’s painful to watch their son suffer.
Mum Shruti said: “We have met all the doctors in Delhi but till now we haven’t been able to find any treatment. His health is failing as he grows.
“The size of his leg is increasing day by day and that’s what breaks my heart.”
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