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Meet Taylor

Taylor is now 11 years old and has been battling Neuro Degenerative Langerhans Cell Histiocytosis since she was diagnosed in March 2010. Through it all she always has a smile on her face and a positive attitude. For more information on Taylor's story please go to the About Taylor page. 

This is a picture of Taylor with NY Rangers Captain Ryan Callahan. The team is wearing blue for Team Taylor!

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What is Taylor's Histio Wish?

We created this site because it has become very important to our family to raise awareness for Histiocytosis. Taylor always says that she wants EVERYONE to know about Histio & what it is. She has inspired us to push to teach more and more people about Histiocytosis. We thought that through our friends & family we could pass this page on. If we tell 50 people about this site and those 50 people tell 10 people. That would be 500 people that now know something about Histiocytosis.
Please go to the What is Histiocytosis page and learn more about this disease and what it does to all of  these kids and adults. AWARENESS is the key. Last year we went to a press conference on Rare Disease Awareness Day at the hospital Taylor is treated at. The night before the press conference Taylor wrote something to read, if you would like to read it you can find it below.

 

"My mom asked me if I wanted to try to talk about histiocytosis & tell people my story & I said yes. I want to tell people about Histiocytosis because if I tell people I have it they don't even know what it is. Alot of times they say that I look fine & don't look sick but I don't always feel fine inside. I know what it feels like to have histiocytosis & alot of the time it hurts. I have to have chemotherapy & I get really tired, I get bad mouth sores from chemo & then if I am hungry I can't eat, I get headaches, my belly hurts, I get alot of muscle cramps & I even throw up sometimes. I had to go to the hospital alot of times because I got sick with a fever. But the worst part is I can't do things with my friends or play soccer during chemo week & sometimes even when I don't have chemo because I just don't feel good. Sometimes I am afraid to go to sleep because I am afraid I am going to die. Dr. V tells me that I am going to be ok & I really love her for taking care of me. Even when I feel really bad I always try to keep smiling, I know that everyone worries about me & when I smile they smile. I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter. I really want to teach everyone about histio & help Dr. V find a cure so that it goes away & never comes back." 

~~ This is why we are trying to spread AWARENESS.... will you help us? ~~