The 4-year-old Long Island boy who has suffered roughly 15 strokes survived a scare Friday night — but his condition remains grim.
Adam Lefkowitz, whose baffling illness was chronicled in the Daily News on Nov. 30, was preliminarily diagnosed last week with an extraordinarily rare disorder called Degos disease.
The incurable, poorly understood disease is known to cause life-threatening complications such as perforated bowels.
So Adam’s parents were fearing the worst when he was brought in for emergency surgery after experiencing severe stomach pain.
The boy from North Bellmore had already lost the ability to move his legs, open his right eye or go to the bathroom without a catheter.
“We can use lots of prayers right now,” Adam’s father, Evan Lefkowitz, wrote on Facebook.
But the brave boy pulled through. Doctors found three holes in his stomach that were easily repaired.
“Thank goodness,” Adam’s mother, Dina Lefkowitz, said Saturday.
“It basically was the best-case scenario. We were able to breathe a little bit easier.”
Adam’s battle is far from over, however.
He has been diagnosed with the most severe form of Degos disease — which leads to the blockage of arteries and, in Adam’s case, attacks the central nervous system.
Fewer than 200 cases of Degos disease have been reported in medical literature.
In recent days, Adam has been put on an experimental drug called Eculizumab — becoming the first pediatric patient to ever receive the treatment.
Doctors are awaiting authorization from the family’s insurance company to begin a second experimental drug, Trepostinal, which costs nearly $ 180,000.
“We are in very unchartered territory,” his father wrote on Facebook.
“These drugs will help relieve the symptoms, prolong his life, but not cure the disease. As of now, there is no cure.”
Adam’s medical nightmare began in August.
He awoke one night complaining of severe headaches. Weeks passed, and his symptoms worsened — flummoxing Adam’s doctors.
Then came the strokes, one after another.
By the time he arrived at the Children’s Hospital of Philadelphia in November, Adam was a shell of his former self.
He had suffered so many strokes that his parents lost count, and he was confined to a hospital bed.
Adam was diagnosed with Central Nervous System vasculitis — a blood-vessel disease of the brain and spinal cord — but wasn’t responding to treatment.
Doctors are now confident he’s suffering from Degos disease, which can accompany vasculitis.
Adam’s headaches have subsided in recent days and his right eye has improved sightly — offering his parents a glimmer of hope.
“We’re hoping that he will be the pioneer of making progress with this disease,” Dina Lefkowitz said.
“We’re hopeful but terrified.”