#Repost @elisabethparker with @get_repost ・・・ It’s World Rare Disease Day and the last day of Noonan syndrome awareness month. What we want you to know about Noonan syndrome is that it is a serious, multi-system disorder that affects everyone differently. For Ezra, his greatest challenges have been related to leukemia (JMML), various surgeries, small stature, food allergies, frequent sickness, and vision. However, he is tenacious and resilient and is currently thriving as a kindergartener! He is smart, sassy and funny - he loves Batman, legos, coloring, books and movies...and even though he is small for his age, we hope you will never underestimate him or treat him differently than any other almost 6-year-old. We believe that awareness leads to compassion and inclusion, and ultimately to action, research, treatments and cures. Noonan syndrome is apart of a larger group of rare conditions called the RASopathies - we are passionate about supporting research for these conditions via @rasopathiesnet. ❤️💙 . If you’re wearing jeans today to show your solidarity for the rare disease community, thank you! We’d love to see you post a picture of you wearing them in your feed or in your stories! Tag me: elisabethparker and add the Extraordinary Ezra hashtag so we can follow along. 👖💓 . Check out my stories later today as I share some friends from our amazing rare disease community! “Alone we are rare, together we are strong.” 🦓🧬🥰 . . . . . WRDD2019 #rarediseaseday #rarediseaseday2019 #showusyourstripes #strongertogether #communityovercompetition #community #littlestwarrior #advocatelikeamother #tbt #thursday #globalgenes #showyourrare #ittakesavillage #mytribe #family @shinelightonrarediseases @globalgenes @nord_rare @rare_advocates (at Beaverton, Oregon) https://www.instagram.com/p/BucjqlTjZYz/?utm_source=ig_tumblr_share&igshid=clng18rabq4p