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Life with One of the World’s Rarest Syndromes (Hallerman-Streiff)

May 31, 2021
Are you ready for your interview? If there is something. There is something unique about you. Why are you unique? Something that is special about you. Have you ever been envious of your sister, but how would you describe your sister? and whatever it is, she made me feel sad. I do not have one. How does it feel when you hear Michelle say that she wants to follow in your footsteps? Well, I think it's very good because it means that I have good steps to follow. I guess you know it's not something she wants Bigfoots yeah Bigfoot is out there it's a path she likes and she likes the person I've become so it's nice to hear what you want someone to think when they see you around the same first time you want me to dance around i can't believe you're yelling at me i'm not entertaining i explained why you're yawning you know i'm a sensitive guy i want to start crying in a minute when someone sees you for the first t time yes, yes, what do you expect them to think?
life with one of the world s rarest syndromes hallerman streiff
I was walking from my room across the hall to the bathroom and Michelle was alone in her room with a full length mirror and she didn't know anyone was there and I think she was. in a new outfit or something and she looked in the mirror and said I look really good today and I don't even remember that I know because that's an everyday thing for you but a lot of people in this

world

or not don't have that kind of view of themselves, so I think that's one of the best things about you because you're so unapologetically specific to yourself.
life with one of the world s rarest syndromes hallerman streiff

More Interesting Facts About,

life with one of the world s rarest syndromes hallerman streiff...

My next question: what question? that she's a liar, there are so many words we could use to describe Michelle, um, I know she doesn't like daring, so I'll say she's strong willed and she has power, she has very specific opinions about things and she's very smart, yeah well i just think you're very you know what you want and you know what you think and you know your opinions and you want to assert them at every opportunity would you mind sitting down for this one thank you thank you thank you thank you thank you you like dumb people yes why are you Well I'm going to ask you the question number 1 million seven hundred thousand and eighty two of this interview are you ready hey what are you laughing at I'm serious I'm following the lead calling me a liar yes I'm serious here no I'm not calling you a liar but you passed from ten to 365 maybe you're calling me on a trim oh i'll call your skipper you call me you call me a captain yeah i've never skipped anything in my

life

you're skipping i would never skip a number are you ready This for question number ten thousand eight hundred and fifteen?
life with one of the world s rarest syndromes hallerman streiff
You can call me Skippy, would you rather be seen as friendly or trusting? i think you're both love yourself more than anyone i've ever met yeah so i wish i could have an eighth of that which leads me to my next question question 1517 are you ready for that? Yeah, if you're not daring, how does it feel to be Michelle's mom? Being Michelle's mom? in my

life

, as well as the most exhausting and worrying thing in my life. I love her to death. I am so. I feel so blessed that she is in my life along with all her challenges and all the difficulties we have. we've all endured she's still the strongest in the family because she's the funniest she's extremely smart and generally makes me happy when i'm down which is sucking well why don't you reply and then i'll reply later ok? tricks full click yes so it's basically like blowing your nose for a person without a tracheostomy it clears the mucus out of the trick yeah just so we're clear what a trick is barely Chris I guess that's just silly but it helps me to know more or less. like blowing your nose yes but you don't blow your nose so now i'm training the section on license first i get in the water then i go in you understand why sometimes your mom could be worried about you a lot times insurance and Medicaid both challenges medication all of a sudden light blue angel been on a medication for seven years all of a sudden they say we're not going to try that anymore and it's going to be like a $500 a month thing , yeah, and we jumped through the hoops the shells and all that, but so much happened over those 22 years that that's what's exhausting, but it's just a game that insurance and Medicaid play and yeah, to keep your costs down and you have to play the game you have to play the game we have to keep you going Lady Jane, when did you first learn how to help your sister with the candy? 12 I think one day I asked my mom.
life with one of the world s rarest syndromes hallerman streiff
I don't want to say it's an easy procedure and it's one less thing for them to do my mom taught me and then what 12 years later I'm uh newly graduated nurse what's your diagnosis what's that 26 of the 28 features that make up hmm how do you would describe mom um it's rare Genetic disorder, one of the main features of this syndrome is a cranial-facial disorder and along with that comes cataracts, small airways, sunken chin, dental abnormalities, high palate, small nose and then there are many other characteristics that can be associated and as Michelle said she is 26 to 28 and you only need to be seven or eight to be diagnosed you have any fears there any questions I won't ask you any questions about robots I promise I won't even say the way I will Don't even say the word robots.
I'm not going to do that. I promise I won't say the word robots. Have you two always been as close as you are now? I think so. I'm sure we had a few years like adolescence. When we were working we were kind of in different spaces in life, but now I think when we were in our 20s we were like Dusty, yeah, especially in the reply, yeah, we send you to his IMs and stuff, pictures and selfies and easy gifs. I will never say the word robots. Robots won't come out of my mouth again that's my troll face if you could go anywhere in the

world

where would you go someone sees you in public like at the grocery store in the park wherever you are do you want them to come say hi You find it intimidating when they're on high, yeah what do you think when people stand on high and talk to you?
Oh so it's because of your vision and when I'm this close you can see me but when I'm up high you can't see me you are able to see far people need to look past their differences and into their soul in their heart because it's the biggest heart you will ever know what in this world makes you the happiest omg who is this twisted beast i play with her i love her i dont like picking up poo so my parents do that but i see u opportunities i'm a prostitute what's the best thing about being a dog mom taking care of me if she takes care of me when i'm sick yes what are some of the things that make you sad Wow noises so she likes my face fiction are you able to enjoy the present without worrying about it 100% future of course the future is always there but we can get into something but you said it perfectly I know but we have a see we are talking about the same thing well said

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