Caitlyn Captures Hope

This inspiring young advocate shares her thoughts on ECD.

By Jessica Corkran, ECD Global Alliance
November 28, 2017

Meet Caitlyn Walch, patient advocate star in the making. As an 11-year-old granddaughter of ECD patient Tony Giambra, she has been armed with lots of information about Erdheim-Chester disease.  “She is constantly informing people about ECD and knows all about those dreaded histiocytes,” says grandmother Margaret “Peg” Giambra.

Caitlyn’s special bond with her grandpa has driven her mission to fight ECD alongside him.  She has attended many doctor’s appointments and sat through many hours of hospital visits.  She has raised awareness of this disease in her school with her peers and educators as well, making it known what a terrible, rare disease has affected her beloved grandpa. This year, she accompanied her grandparents to the Annual ECD Patient and Family Gathering to show her unwavering support to her family and the ECD community.  The event inspired her to make an ECD ribbon ornament with a photo of herself and Dr. Diamond for her Christmas tree.  And of course, she made one for her grandpa to enjoy as well.

Among her awareness efforts, Caitlyn also lifts Tony’s spirits and keeps him motivated to continue fighting every day. Peg states  “She is his best medicine and the only one who can get him to do his exercises!”

“I, Caityln Walch, think ECD is very important. My grandpa was diagnosed with ECD about 2 years ago. That didn’t stop him though. Ever since I was born my grandpa took care of me so I will take care of him. And that’s why ECD is so important to me. Don’t give up because of ECD, it should only make you try harder.”