Roma has DiGeorge syndrome, a genetic disorder that disrupts embryonic tissue development and causes congenital organ defects. He underwent two heart surgeries immediately after birth, and another a few months later. Afterward, the baby couldn't breathe on his own and had a tracheostomy inserted. Roma spent six months in intensive care, during which time doctors tried to find the cause. It turned out that Roma had developed pulmonary hypertension. The prognosis was grim: he would be permanently ventilated and would be unable to walk.
In February 2023, Roma gradually began breathing on his own, without the need for a ventilator, albeit with the support of an oxygen concentrator. Speech therapy taught him to swallow and drink water. And last December, a true New Year's miracle occurred – Roma began walking.
A few days ago, the tracheostomy was removed, and Roma is now breathing on his own and no longer requires any ventilators.
Of course, Roma still needs treatment: another heart surgery and removal of the gastrostomy tube. But first, he needs rehabilitation, as the boy continues to have paralysis of the epiglottis and vocal cords due to the long-term use of the tracheostomy.
We are starting a fundraiser to pay for Roma's rehabilitation and ask for your support. Let's help him take another step toward a happy childhood free from hospitals.
Verified by Tooba
Verified by Tooba
