Basti woman hopes for Paa-nacea for progeria-afflicted son
Basti-based Pooja Pandey says her two-and-a-half-year-old son Sundaram suffers from progeria , a rare genetic disorder in which a child shows accelerated ageing symptoms and dies in the early teens.
It is a mother’s plea for help to save her child from his Paa-esque plight.
Basti-based Pooja Pandey says her two-and-a-half-year-old son Sundaram suffers from progeria , a rare genetic disorder in which a child shows accelerated ageing symptoms and dies in the early teens.
It is the same disease which afflicted the character portrayed by Bollywood icon Amitabh Bachchan in the Hindi film Paa.
“Doctors have said he will live for another 10- 12 years,” says Pooja. The child’s father Krishna Pandey is a poor farmer.
Born on June 23, 2016, the boy began showing unusual ageing symptoms and looked much older than other children of his age by the time he was five months old.
When the Pandey couple took the child to doctors, they were told that he suffered from progeria, Pooja says.
Now, the boy’s hair has turned grey, his eyebrows are missing and he has just one tooth. Health complications are frequent for him. These include recurrent and prolonged bouts of fever, breathlessness and low haemoglobin. As he is unable to chew, swallow and digest food easily, he is being given milk with toast.
The health problems worsen in summer compared to the winter.
Dr JLM Kushwaha, chief medical officer of the Basti district hospital, says, “The child is suffering from an uncommon disease, but efforts are being made to provide him with the best treatment.”
Dr RN Singh, a paediatrician, says the children suffering from progeria usually die after attaining the age of 14 or 15.
Pooja Pandey , who spends almost all her time taking care of the child, says child specialists at the Basti district hospital, the BRD medical college and the Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, told her, “The disease is rare, untreatable…you have no choice but to keep patience.”
Pooja says poverty prevented the couple from taking the child elsewhere for treatment.
She also says she has met journalists, requesting them to cover her story so that MPs, MLAs or the chief minister take note of her problem and extends a helping hand.
She claims the Basti district hospital authorities, the district administration and the child welfare committee are aware of her son’s predicament, but no help has arrived yet .
She adds she will soon meet UP CM Yogi Adityanath with an appeal for help.
As suggested by most doctors, she stays home with the child who is undergoing treatment for fever and breathlessness. Oxygen is administered to the boy at regular intervals by private doctors. Blood transfusion is also frequent.
“The fever is under control in cold weather. Some doctors have even suggested to keep the child in a cold environment by installing an air-conditioner but we can’t afford one,” says Pooja.
The boy is the second child of the couple who have a daughter, two years older than the son.
She also says the doctors have cautioned her not to conceive again without getting tests done as the risk of delivering another such baby was high.