Adam Lefkowitz is an adorable four year boy who lives right here on Long Island. His mother Dina and I went to elementary through high school together. Adam, her first child, was a completely normal, healthy child from birth and only went to the doctors for routine check-ups and minor viruses. In late August, Adam began waking up in the middle of the night with horrible intense headaches. When Dina took him to the doctor’s they told her it was just a simple virus that had to run its course. When the headaches didn’t improve, Dina took Adam back to the doctor who once again told her it was just a virus. Dina knew that something more was wrong and so she took Adam to Cohen’s Children’s Hospital here on Long Island. There, they performed an MRI which didn’t show anything and assured her that it was a virus and that the pain would go away. It didn’t. Dina returned to Cohen’s Children’s Hospital and after further tests were done, Adam was admitted to the hospital. While there they misdiagnosed Adam over and over again and then one day he began to limo and lost use of one hand. They performed another MRI which then revealed that Adam had had 4 mini strokes. Further testing was done and Adam was diagnosed with an extremely rare autoimmune disorder called Primary Central Nervous System Vasculitis, which is otherwise referred to as Primary Angiitis of the Central Nervous System (PACNS). Adam was started on a regiment of steroids and chemotherapy. Unfortunately, the treatment was not working.
Recently, Adam has been transferred to Children’s Hospital of Philadelphia. There they are trying new treatments and are continuing to test Adam to determine the true cause of his worsening condition. To date he has had approximately 15 mini strokes including 2 on his spine and 1 on his brain stem. Adam can no longer move either leg and is essentially immobile at this point. In addition he can no longer open his right eye nor can he control its movement. He is also requiring the use of a catheter to pass urine. They have started a new medication and are praying it works. Adam is on methadone around the clock for pain management and is becoming frustrated by not being able to leave his room. Even with losing the use of his eye, and his catheter, he is still cooperating with his therapist and he still has fight in him.
In the meantime, we are asking for people to share his story in the hopes that someone somewhere may recognize his symptoms and may be able to provide an answer to what treatment is needed. More on Adam’s story can be viewed here:http://www.nydailynews.com/news/national/exclusive-mystery-illness-cripples-long-island-boy-4-article-1.2028049.
Also, Adam’s medical bills are mounting and with the holidays right around the corner this family (including Adam’s 2 year old sister) needs our help. A fundraising page has been established at :http://www.youcaring.com/medical-fundraiser/sweet-adam-s-fight-against-cns-vasculitis-/261663
And a Pampered Chef fundraiser has been started. Do your holiday shopping while helping this wonderful and deserving family: http://www.pamperedchef.com/pws/jennjohnson4/guest-landing/8896684801179.
