I met her on a Wednesday, June 28th to be exact. The Usher Syndrome Coalition posted a video, “meet Ava Bullis”. At first I was reluctant to click it, because I was afraid I would end up in tears. It’s not always easy watching people with Usher Syndrome and the daily struggles they might encounter. I was wrong.
What I saw was an amazing inspiring girl, the kind of person I want my son to be. Ava, you put a huge smile on my face that day and continue to do so. There’s hasn’t been a single day since that Wednesday that you haven’t crossed my mind, that I haven’t told other people about you. Almost bragging, like, you have to see this girl, she has Usher type 1 just like Jackson and she is awesome.
Thank you Ava for sharing your story, for reassuring me that the kids are allright, even the ones with Usher syndrome. You are surrounded by a very loving family and I believe I can learn a lot from all of you. I’ve never met you, but it feels as if I do. We are all on the same journey. #onecommunity