For three-year-old Muaaz Ahmad, who suffers from the rare ‘Ondine’s Curse’ or the Congenital Central Hypoventilation Syndrome which makes him unable to breathe during sleep, the fight for survival is continuous.
Muaaz cannot sleep without a ventilator by his bed each night in his posh Sector 15 home. However, this is being seen as an improvement in his condition as he was on ventilator 24 x 7 for the first 18 months of his life.
“The boy’s fight for survival will continue till he turns five and is fit for surgery. Muaaz turned three on July 10,” said his grandfather Dr. Akhlaq Ahmad, an orthopaedic surgeon.
“We got to know about his illness the day he was born. The first 18 months very really hard as he was living on ventilator support. Now, we have three ventilators at home as we do not want to take any chances,” said the grandfather.
Despite his illness, Muaaz looks like other normal children and also goes out to play with them but under under strict supervision.
“We do not leave him alone ever and remain watchful all the time. Earlier, as many as eight oxygen cylinders would be consumed a day but now the number has reduced to one or two cylinders.
“We have to be cautious till he turns five and hope that he gets fully fit after the surgery,” he said.