Thank you for joining us at our Pizza Paint Party! All proceeds went to Taylor, a 15 year old girl with Neuro Degenerative Langerhans Cell Histiocytosis. Please read her story below.


To see photos from the night check out our Facebook Album.

"Taylor is a 15 year old girl that “looks” fine, she loves school, to play soccer, hang out with her sister Sami, watch “her guys”( the NY Rangers) play hockey and to have fun. At the age of 3 Taylor was diagnosed with Diabetes Insipidus, at that time the doctors didn’t know what the cause was. When Taylor was 8 years old she was diagnosed with Neuro Degenerative Langerhans Cell Histiocytosis. The histiocytosis is the cause of the Diabetes Insipidus, it has caused a lesion on her brain, as well as other neurological issues. Over the past 6 and a half years she has gone through things that no child should have to endure. She has had more MRI’s, X-Rays, CT scans, PET scans and surgeries than most people do in a lifetime. In 2010 she began chemotherapy to treat the histiocytosis, since then she has had over 175 intravenous chemotherapy infusions as well as numerous oral chemotherapies. In 2013 she had a craniotomy to try to get a better understanding of the brain lesion and find the “right cocktail” of chemo to treat her.


"Taylor has a light in her that shines through her smile, she is one of the strongest people we have ever known and she is only 15! She is usually smiling and always wants to help other people.  Since she has been diagnosed and realized that there are no definitive answers for her treatment plan because it is so rare and not many people know about Histiocytosis she has taken every opportunity to tell people about it. Her wish is for more people to know about histio and to help us spread awareness. She always says that “just because Histio is rare doesn’t mean that kids like me that have it don’t matter.” We are doing our best to show her that they all matter."