Imagine growing up with someone since the age of five, only for that individual to be ripped away from you without warning.

It happened to one Western New Yorker last year after a rare and unexpected diagnosis.

Taylor Wilson grew up with Paige Casillo as her best friend since she was only five years old, and it has been more than challenging for Taylor to live her day to day life without Paige. 

Last summer, Paige Casillo passed away from a rare disease called hemophagocytic lymphohistiocytosis, otherwise known as HLH. It is an aggressive systemic inflammatory syndrome that is uncommon in adults and more prominently seen in children. 

HLH typically is paired with fever, enlargement of the liver and spleen, enlarged lymph nodes, yellow discoloration of the skin and eyes, and occasionally a rash. While the disease is rare, it can be fatal. 

For her birthday this year, Taylor organized an event to raise awareness for the rare disease. 

“This year, all I wanted to do was to take time to celebrate her life and honor her memory by raising money to go towards research for HLH,” Taylor said.

Taylor does not want anyone else to lose someone they care about due to this rare disease that does not yet have enough research behind it in order to find out what could potentially be a cure.

“It’s really important for me to try to get some help to end this,” Taylor said.

While the fundraiser event happened this past weekend, you can still find out how you can get involved to spread awareness for not only Paige’s life but the disease that infects one in every approximately 56,000 people. All that information is available here

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