Adorable 3-year-old Akshaj Khandelwal is suffering from a very rare condition that has causes extreme growth on the right side of his body.
His mum Shruti explains, ‘Akshaj, since birth is suffering from a syndrome called Klippel-Trenaunay syndrome and it’s very rare.’
The main symptoms of the condition are port-wine stains, large varicose veins and excessive growth in one limb – all of which poor Ankur suffers from.
Dad Ankur says, ‘Initially, it wasn’t that much when he was born, but his body is growing with time. His right side is continuously growing and the left one, the normal one, is getting weak. He is not able to walk for long and gets tired very easily.’
Shruti adds, ‘it doesn’t hurt while he’s walking, but once he is tired suddenly his foot starts to hurt. Then he asks me to massage his foot.’
Ankur explains that although Akshaj’s condition is manageable for now, the older he gets the more it begins to impact his day-to-day life.
‘Akshaj’s life is most affected from bleeding in his leg. It starts anytime. The red dots in his leg burst anytime blood accumulates in them, they burst and it starts bleeding. So the bleeding affects his mobility and we have to make him lie down.’
Sadly, there is currently no cure for the condition, and doctors in New Delhi are struggling to treat Akshaj’s symptoms. On a recent visit to the Fortis Hospital Doctor Krishan Chugh explained a little more about Klippel-Trenaunay syndrome to the family.
‘What happens is that the veins of the legs are formed in such a way that they are not draining the blood back from the leg to the heart. Because of these veins being abnormal the soft tissue and even the bone in that area starts overgrowing.’
‘Although it affects mainly the lower limbs and generally one side, in an occasional patient it can affect both sides. Like in this particular child the buttocks area of both the sides are affected. All these things lead to a lot of deformities and dysfunctions in this area. He is unable to perform lets say walking, sitting normally.’
‘Strictly speaking there is nothing that could work wonders. We’re not trying to reverse anything that is probably not possible. The positive aspect is that most of the time his brain is totally uninvolved, totally spared. Which means he is able to learn, he’s able to live a life so that can be looked after by mentality and positive attitude.’
And being positive is just what little Akshaj is doing! Despite his condition causing him difficulty, his parents believe that the toddler is too young to know the truth and have told him that he is lucky to have his condition and that it is a gift from God.
Dad Ankur says, ‘we always try to keep him positive and keep motivating him that whatever your condition is, it’s rare. You can tell your friends it’s a gift from god, you’ve had it from birth and nobody should care about it.’
Shruti adds, ‘Negativity always creeps in very fast but we still try and overcome it.’
No matter what the future holds – we wish brave Akshaj a very happy life!