* Update: Adam has now been tested and diagnosed with Dego’s Disease
Adam is a 4-year-old boy that I had the pleasure to work with a few weeks ago before he was readmitted back into the hospital. His family is asking to share their story to help bring awareness to Adam and his CNS Vasculitis and the treatment for it. The doctors have been unable to control his illness since he was diagnosed in August.
If you know of a physician, family member or someone who may have some answers to help Adam and his family please share their story told through the Daily News, NY.
Mystery Illness Cripples Long Island Boy
The family has also put together a You Caring page to help support his family with the overwhelming medical bills.
Sweet Adam’s Fight Against CNS Vasculitis
Please share his story, someone may have an answer to help treat Adam.
Thank you!
Have they tried Cohens, or nyu Langone has a critical care pediatric unit.
They started at Cohens. Unfortunately Adam lost his battle with Dego’s Disease and passed away on December 28th. The YouCaring page is still up to help fundraise for the medical expenses.