4-year-old boy suffers mysterious strokes as parents search for answers 
 
 share share tweet pin email 
 
 He’s only 4 years old, but Adam Lefkowitz has already had 15 strokes, and his parents are desperate to find out why. 
 
 Adam’s father, Evan Lefkowitz, said his son is doing “worse and worse” each day. Adam can no longer see out of one eye or walk. 
 
 “He can’t open his eye and he’s weak and even when he goes to the bathroom, he rests his head on my wife’s shoulder," Lefkowitz, 35, told TODAY. 
 
 
 
 “He’s fighting and really trying, but it’s weighing on him,” Lefkowitz added. “He’s stuck in a room and wants to go out on my shoulder like he always does. It’s getting tough on him.” 
 
 Courtesy of the Lefkowitz family Evan and Dina Lefkowitz with their son Adam and daughter Emily on Thanksgiving Day at Children's Hospital of Philadelphia. 
 
 The little boy from North Bellmore, N.Y., has been diagnosed with a rare and potentially fatal autoimmune disorder, but he is not responding to treatment. For the last three months, Adam has been treated for primary central nervous system vasculitis and is now at Children’s Hospital of Philadelphia (CHOP). 
 
 
 
 According to his family, doctors have disagreed about the diagnosis, even calling in experts from as far away as Canada. 
 
 “They’re throwing the book at him in regards to medication and treatment,” Lefkowitz said. 
 
 Adam’s ordeal began last August when he woke up in the night with severe headaches. His parents took him to the ER and scans showed fluid on the brain, but doctors said it might be viral and clear up. 
 
 Courtesy of the Lefkowitz family Adam Lefkowitz, shown here with his younger sister Emily, has put on 25 pounds while his family searches for the right treatment. 
 
 After he was treated at Cohen Children’s Medical Center in Long Island, doctors sent Adam to CHOP. Hospital officials declined to comment on the boy’s condition for privacy reasons. 
 
 Adam has been treated with steroids and chemotherapy, but nothing has worked so far. The therapy has caused him to gain 25 pounds and his parents say he is not the boy they knew. 
 
 Just this week, Adam had another stroke on his brain stem and two in his spine. 
 
 “Frustrating is not even the word,” Adam’s mother, Dina, told the New York Daily News, which first reported the story. “We’re living in hell, really.” 
 
 Central nervous system vasculitis is inflammation of blood vessels in the brain or spine, which occurs most often alongside other autoimmune diseases. The condition can be life-threatening. Inflamed blood vessels can block the flow of oxygen, causing brain damage. 
 
 “We don’t really have a true diagnosis,” said Lefkowitz. “He definitely has some type of vasculitis, but there is something underlying that is causing the aggressiveness of it.” 
 
 The condition is more common in adults than in children, according to Dr. Irene Katzan, director of the Center for Outcomes Research and Evaluation, Neurological Institute at the Cleveland Clinic. 
 
 “What causes the inflammation is sometimes unknown,” Dr. Katzan, who did not treat Adam, told TODAY. “We look at infections or malignancies or other systemic disease.” 
 
 When no cause can be found, the disease is known as “primary.” 
 
 “It’s a bear of a diagnosis both in its rarity and difficulty in diagnosis and treatment,” she said. “This sounds like a tough case, and they are pulling out all the stops.” 
 
 Doctors are awaiting approval to try a drug, Tysabri, which has been used to treat multiple sclerosis, but they are running out of options. 
 
 
 
 “The doctors are trying everything they can. All we have is hope right now,” said Lefkowitz. “We have to have hope.” 
 
 Doctors are also performing genetic tests on the family, and the parents worry about their 2-year-old daughter, Emily. 
 
 Melanie Lefkowitz, 40, of Ithaca, N.Y., who is Adam’s aunt, said the mystery illness has taken a toll on the family. 
 
 “He’s basically been a downhill spiral,” she told TODAY. 
 
 The family’s medical bills are mounting as well, and so supporters started an online fundraising campaign. His aunt said the family was looking at hundreds of thousands of dollars in medical bills. 
 
 But the family just wants Adam to be well — and back to his sweet, playful self. 
 
 “He’s a special kid,” said Adam’s father. “Throughout all this pain and suffering, he is still that sweet little boy.” ||||| In late August, Adam began waking in the middle of the night with horrible, and intense headaches. He had been a completely normal, healthy child from birth, going to the doctor for routine check ups and minor virus’ only, so his mother knew something was not right. Adams mother, Dina, started by taking Adam to the PM pediatrics, and they assured her that it was a simple virus that needed to run its course. After a few days passed and the headaches did not improve, Dina took Adam back to the doctor whom again, dismissed her concern. Dina, not one for ignoring her motherly instincts, brought Adam to a Children’s Hospital on Long Island. After an MRI was done, they assured Dina that once again, Adam had a virus and the pain would go away, when it didn’t she went back and after further tests were done he was readmitted to the hospital. Again and again they wrongfully diagnosed Adam, until one day Adam began to limp, and lost use of one hand. After the hospital tried to convince Dina that Adam was having a reaction to a lumbar puncture, Dina insisted on a repeat MRI, which showed Adam had had 4 mini strokes. Upon further testing Adam was diagnosed with an extremely rare autoimmune disorder called Primary Central Nervous System Vasculitis, otherwise referred to as Primary Angiitis of the Central Nervous System (PACNS). Treatment of this disorder is regiment of steroids and chemo, which began about a month ago. Unfortunately, as of Friday November 7th, they are not working. They are beginning a new treatment called IVIG, which causes Adam extreme debilitating headaches. Due to the rarity and severity of this disease Adam will be transferred to Children’s Hospital of Philadelphia. Due to the strokes, 7 total, and necrosis of the brain tissue, it is unclear if the treatment works the extent of what Adam’s medical needs will be. We do know that he will need lengthy treatment, physical therapy, and nurse care at home. With medical bills mounting as well as now having to travel out of state for care, we ask for help and generosity. Adam deserves the best care, and will receive it with your help. ||||| Bill Denver for New York Daily News Dina Lefkowitz holds her ailing son Adam, who was a happy and healthy 4-year-old boy before suffering a series of strokes starting in August. 
 
 Just three months ago, Adam Lefkowitz was a perfectly healthy 4-year-old boy living a perfectly normal life. 
 
 The Long Island youngster relished the kinds of things most young boys love. 
 
 Climbing trees with his friends. Playing on monkey bars. Going to Chuck E. Cheese. 
 
 None of that is possible now. 
 
 Adam has suffered nearly 15 strokes since August after coming down with a debilitating and mysterious illness. 
 
 He’s confined to a bed in the pediatric ICU at the Children’s Hospital of Philadelphia — unable to move his legs, open his right eye or go to the bathroom without the aid of a catheter. 
 
 “Every day it’s getting worse,” said Adam’s dad, Evan Lefkowitz, “and it’s happening pretty rapidly and nobody knows why.” 
 
 Adam, who lives in North Bellmore, has been diagnosed with an extremely rare autoimmune disorder called Central Nervous System Vasculitis. 
 
 But he hasn’t responded to any of the treatments, leaving his doctors baffled and his parents devastated. 
 
 It’s heartbreaking because all he wants to do is go home. 
 
 They’re hoping a story publicizing Adam’s plight will get the attention of a specialist or parent — anybody, really — who recognizes his perplexing symptoms. 
 
 “Frustrating is not even the word,” said his mother, Dina. “We’re living in hell, really.” 
 
 “It’s heartbreaking because all he wants to do is go home,” she added. “Every single day I have to deal with him asking, ‘When can we go to Chuck E. Cheese to play?’ He’s only 4. He doesn’t understand what’s going on." 
 
 Adam’s ordeal began in the summer. 
 
 One night completely out of the blue, he woke up wracked by ferocious headaches. 
 
 His parents took him to see a doctor who dismissed his symptoms as the product of a “simple virus.” 
 
 But when the headaches persisted days later, Adam’s parents sensed he was suffering from something more serious. 
 
 They brought him to one Long Island hospital, then another. Again and again, the parents were told Adam had a virus — and were assured that the headaches would soon disappear. 
 
 photos courtesy Lefkowitz Family Adam was diagnosed with an extremely rare autoimmune disorder called Central Nervous System Vasculitis, but treatments aren't working. 
 
 But they didn’t let up. 
 
 In a subsequent hospital visit, Adam was admitted and underwent his second MRI. 
 
 This one showed inflammation in the outer layers of his brain, prompting doctors to suspect that he had viral meningitis. 
 
 Medication was prescribed. The headaches subsided. 
 
 But a day or two before he was to be discharged, Adam awoke with a limp. 
 
 “I told them, ‘He didn’t come here with a limp. I’m not taking him home with one,’ ” Dina said. 
 
 A third MRI revealed that Adam had suffered four mini-strokes. The Lefkowitzes were aghast. They had never heard of a child so young suffering a stroke. 
 
 A brain biopsy was done. A pathologist concluded Adam was suffering from the potentially life-threatening CNS Vasculitis, a rare and little-understood blood vessel disease of the brain and spinal cord. 
 
 photos courtesy Lefkowitz Family Adam Lefkowitz and his younger sister Emily, of Long Island, played together in months prior to his illness. 
 
 He was given steroids and began a course of chemotherapy. 
 
 Nothing worked. 
 
 Over the next couple of weeks, Adam suffered several more strokes. 
 
 He was given new treatments and moved to a rehab facility. 
 
 But the strokes didn’t stop — by then, they numbered in double digits — and his body continued to break down. 
 
 Adam lost the ability to use his left leg completely and he was having trouble moving his arms. 
 
 In mid-November, he was transferred to the Philadelphia hospital. 
 
 His treatments intensified. 
 
 He’s so resilient. It makes me feel bad for not being as strong as he has been. 
 
 “They’re throwing the book at him in regards to medication and treatment,” said Evan, who recently started a new job as a relationship manager for Citibank. 
 
 “They’re piling one on top of the other, and nothing’s helping.” 
 
 Just this week, Adam suffered three more mini-strokes — one in his brain stem and two in his spine. 
 
 “It’s crazy to say, but we’ve lost count to how many he’s had,” Dina said. 
 
 Doctors told the Lefkowitzes, who also have a 2-year-old daughter, Emily, they couldn’t explain why Adam wasn’t responding to treatment. 
 
 The sickly boy is now a shell of his former self. He’s gained 25 pounds from the steroids, can’t leave his hospital bed and has to manually raise the lid of his right eye in order to see clearly. 
 
 “He’s not the boy that we know,” his mother said. “He’s unrecognizable to us.” 
 
 Doctors have no doubt that Adam is suffering from inflammation of the blood vessel walls in his brain, the hallmark of CNS Vasculitis. 
 
 photos courtesy Lefkowitz Family Doctors say they can't explain why Adam isn't getting any better. 
 
 “But they’re thinking that’s not the primary issue,” Dina said. “They think there’s some kind of underlying issue that they’re unable to find and therefore unable to treat.” 
 
 “To be told that his case is so rare that they can’t figure out the underlying cause is unbelievable,” she added. 
 
 “You think with modern medicine, it can’t happen.” 
 
 Dina has remained at Adam’s bedside everyday for the past two months, agonizing over his rapid decline. 
 
 “He’s just kind of rolled with the punches,” she said. “He’s so resilient. It makes me feel bad for not being as strong as he has been.” 
 
 Days ago, Adam was prescribed a new drug, Tysabri. 
 
 If he doesn’t respond to it, it’s not clear what the next treatment option will be. 
 
 “He’s getting worse,” said Evan, his dad. “I’m not sure how much time we have for them figuring this out.” 
 
 “This treatment has to work,” he posted on his Facebook page Friday. “As of right now, there is no plan B.” 
 
 For more information on Adam’s battle, visit http://www.youcaring.com/medical-fundraiser/sweet-adam-s-fight-against-cns-vasculitis-/261663.
– Four months ago, Long Island boy Adam Lefkowitz was a healthy, happy kid who liked to play on monkey bars and climb trees with his friends. More than 15 strokes later, the 4-year-old is barely recognizable to his parents. Diagnosed with a rare autoimmune disorder called primary central nervous system vasculitis, Adam has not responded to typical treatments, stumping every doc who has looked at his case, reports the New York Daily News. The strokes have left the boy's legs limp and right eye closed, and he uses a catheter to go to the bathroom, while steroids have packed on 25 pounds. "He's fighting and really trying, but it's weighing on him," Adam's father, Evan Lefkowitz, tells Today. "He's stuck in a room and wants to go out on my shoulder like he always does. It's getting tough on him." While Adam battles the mysterious source of his illness in a Philadelphia children's ICU, supporters have set up an online fundraising campaign to help cover what could amount to hundreds of thousands of dollars in medical care. As of yesterday, more than half of the $50,000 goal had been reached. (Check out why one family is more than six months into a self-imposed quarantine.)