{"id":30086,"date":"2017-12-31T12:07:24","date_gmt":"2017-12-31T17:07:24","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30086"},"modified":"2025-10-04T04:56:41","modified_gmt":"2025-10-04T09:56:41","slug":"caitlyn-captures-hope","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/caitlyn-captures-hope\/","title":{"rendered":"Caitlyn Captures Hope"},"content":{"rendered":"

Caitlyn Captures Hope<\/h2>\n

This inspiring young advocate shares her thoughts on ECD.<\/em><\/p>\n

By Jessica Corkran, ECD Global Alliance
\nNovember 28, 2017<\/p>\n

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.\u00a0 \u201cShe is constantly informing people about ECD and knows all about those dreaded histiocytes,\u201d says grandmother Margaret \u201cPeg\u201d Giambra.<\/p>\n

Caitlyn\u2019s special bond with her grandpa has driven her mission to fight ECD alongside him.\u00a0 She has attended many doctor\u2019s appointments and sat through many hours of hospital visits.\u00a0 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.\u00a0 The event inspired her to make an ECD ribbon ornament with a photo of herself and Dr. Diamond for her Christmas tree.\u00a0 And of course, she made one for her grandpa to enjoy as well.
\n

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Caitlyn with Dr. Diamond while in New York.<\/p><\/div><\/p>\n

Among her awareness efforts, Caitlyn also lifts Tony\u2019s spirits and keeps him motivated to continue fighting every day. Peg states\u00a0 \u201cShe is his best medicine and the only one who can get him to do his exercises!\u201d<\/p>\n

\u201cI, Caityln Walch, think ECD is very important. My grandpa was diagnosed with ECD about 2 years ago. That didn\u2019t stop him though. Ever since I was born my grandpa took care of me so I will take care of him. And that\u2019s why ECD is so important to me. Don\u2019t give up because of ECD, it should only make you try harder.\u201d<\/p>","protected":false},"excerpt":{"rendered":"

\u201cI, Caityln Walch, think ECD is very important.\u00a0 My grandpa was diagnosed with ECD about 2 years ago. That didn\u2019t stop him though.\u00a0 Ever since I was born my grandpa took care of me so I will take care of him.\u00a0 And that\u2019s why ECD is so important to me.\u00a0 Don\u2019t give up because of ECD, it should only make you try harder.\u201d<\/p>","protected":false},"author":20,"featured_media":2721,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[272],"tags":[331],"class_list":["post-30086","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd","tag-331"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/30086","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=30086"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/30086\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/2721"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=30086"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=30086"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=30086"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}