A five-month-old from Karawal Nagar in Delhi has been diagnosed with the rarest of rare diseases. Yatharth Dixit suffers from Central Hypoventilation Syndrome (CHS), a congenital disorder of the nervous system that causes respiratory arrests (or hypoventilation) when the person is asleep.
This leads to a shortage of oxygen in the body, and the build-up of carbon dioxide in the bloodstream. Thus, every time the person falls into deep sleep, it can cause a life-threatening episode of CHS. There are only 1,200 known instances of CHS in the world, and one only more in the nation.
Yatharth is under observation at the All India Institute of Medical Sciences (AIIMS), where the doctors have advised fitting him with a diaphragm pacemaker that costs Rs 38 lakh and will have to be imported from the USA.
His parents, Meenakshi and Praveen, are trying to raise the money through crowd-funding, but have only gathered Rs 5 lakh so far. "Currently, Yatharth uses a pulse-oximeter monitor," says his mother, "which measures the oxygen level in his blood and alerts us every time it drops below the safe limit. We have to wake our son up every time he falls into a deep sleep as his oxygen level begins to drop. We can't imagine how exhausting this must be for an infant."
Leaving no stone unturned, Praveen has tweeted to the Prime Minister, Minister of External Affairs Sushma Swaraj and actor Salman Khan, crying for help. "Our main focus is stabilizing the child as of now. We are looking at all possible options," said Dr Rakesh Lodha, Professor, AIIMS.