I have Aicardi-Goutieres Syndrome Type II, a rare leukodystrophy. I am strong, brave and beautiful. I love to dance, I am seriously funny, and love to get out and about and meet new people! I’ve never met a stranger 💜 #AGS #aicardigoutieressyndrome #specialneeds #iamspecial #gracieclaire9 #gracieclairesauer #noonesperfect #leukodystrophy
When I see someone disabled I feel like I should just look the other way. I was always taught to never stare because it is perceived as being rude. Never realized I should just be myself and engage and talk. But then again I don't know what type of mood the caretaker is in or the disabled person. I will have a more open heart and just be myself from now on.
You are so beautiful To me You are so beautiful To me Can't you see You're everything I hoped for You're everything I need You are so beautiful To me 💞
Really a nice interaction, nice to see people engaging with you. You are different in some ways and that's perfectly ok, everyone has differences whether you can see them or not. It seems like you really appreciate when people come up to you, that is nice but it shouldn't be so rare, people should talk to you all the time whether you're in a wheelchair or not, I definitely would talk to you if I saw you, you're very pretty and sweet.
Great job walking, I wonder if it would be easier for you to move your feet forward if you were just a teeny bit higher up. Love the dancing at the end! It's really great that you have a standing frame, it's important to be upright and not seated all the time, and also a great position to get and give hugs!
Thank you for all the kind comments. I have a 360 degree camera mounted to the bar that holds my phone for me. Its an Insta360 and I have a few 360 degree videos on my channel. Amazing new technology that helps me document my experiences since I can't use a regular camera.
My current wheelchair is unfortunately not sit to stand but I do have a gait trainer called a KidWalk that allows me to stand and practice my dance moves! 😊 I love pop music and Michael Jackson
@@gracieclaire9 oh cool my fave song is thriller which is perfect for playing HCR2 with I can’t wait till they have the Halloween vibes later this year. Do you have any vids of ur dance moves? I’d like to see them.
