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

Are you ready for your interview? If there is something unique about you. Why are you unique? Like something that is special about you. Do you ever feel envious of your sister? But how would you describe your sister? She was at Stowe School and I saw people like that together. and whatever made me feel sad, I don't have one. How does it feel to you when you hear Michelle say that she wants to follow in your footsteps? Well, I think it's very nice because it means 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. for the first time. first time you want me to dance I can't believe you're yelling at me I'm not entertained 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 time yeah, yeah, what do you expect them to think ?

I was walking from my room down the hall to the bathroom and Michelle was alone in her room with a full length mirror and I didn't know anyone was there and I think she had put on a new suit or something and she looked in the mirror and He said: "I look very good today and I don't even remember that, I know because it is an everyday thing for you, but a lot." 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 specific and unapologetic.

My next question: What question 24, hey, would you describe yourself as? sassy and whoever said she is a liar, there are many words we could use to describe Michelle. I know she doesn't like boldness, so I will say that she is strong willed and empowered, she has very specific opinions on things and is very intelligent. Yeah, well, I just think you're very, you know what you want and you know what you think, you know your opinions and you want to affirm them at every opportunity. Would you mind waiting for this? Thank you thank you thank you. thank you thank you do you like stupid people yes why okay I will ask you question number one million seven hundred thousand eighty two of this interview are you ready hey what are you laughing at?

I'm serious, I'm keeping score, you're not going to place, you don't believe him, you call me a liar, yes, I'm serious, no, I'm not calling you a liar, but you went from ten to 365, maybe you're calling me on a beautifying, oh. I'll call your captain, you call me, you call me captain, yeah, I've never skipped anything in my

life

, you're skipping, I would never skip a number now, are you ready for question number ten thousand eight hundred and fifteen, can you? Call me Skippy, would you rather be seen as friendly or trusting? I think you both are, you love each other more than anyone I've ever met, yes, so I wish I could have an eighth of that leading me to my next question, question 1517, are you?

Ready for it, yeah, if you're not bold, what are you? What is it like being Michelle's mom? Being Michelle's mom. It's almost the most rewarding thing I've ever done in my

life

, as well as the most exhausting and worrying thing in my life. I love her. Until death, I feel so blessed that she is in my life, you know, with all her challenges and all the hardships that we have all endured, she is still the strongest in the family because she is the funniest, she is extremely intelligent . and to a great extent she makes me happy when I'm down she's sucking good why don't you reply and then I'll reply after the tricks are okay I complete the click yeah so it's basically like blowing your nose for a person without tracheostomy? removes the mucus from the trick, yes, so it's clear what a trick is, just Chris.

I guess it's silly, but it helps me know more or less how to blow your nose, yeah, but you don't blow your nose, so now I'm training in the licensing section. First I get into the water and then into the income. You understand why your mother may sometimes be worried about you. A lot of times, insurance and Medicaid, we both have challenges, medication, all of a sudden, out of the blue. The blue angel has 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 jump through hoops and peels and all that, but it happened So.

A lot of it over those 22 years is kind of exhausting, but it's just a game that insurance and Medicaid play and yeah, to keep their costs down and you gotta play the game, you gotta play the game, we gotta keep going ma'am . Jane, when did you first learn to help your sister with the treat? 12 I think one day I asked my mom. She looked like she could suck it and it seems like she could, why not? I mean, it's an easy procedure and it's one less thing for you to do, so my mom taught me and then 12 years later, I'm a newly graduated nurse.

What is her diagnosis? What are those 26 of the 28 characteristics that make them up? Hmm, how would you describe it mom? a rare genetic disorder, one of the main features of this syndrome is a craniofacial disorder and along with that come 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. Do you have any fears? Any questions? I won't ask you any questions about robots. I promise I won't even tell you the way.

I won't even say the word robots. I will not do it. I promise you. I won't say the word robots. Have you always been as close as you are now? I think so. I'm sure we had a few years like that. As a teenager, when we were working, we were in different spaces of life, but I think now that in our 20s, we were both like Dusty's, yeah, especially in the response, yeah, we instant message you and stuff. , photos, selfies and gifs. I will never say the word robots robots it will never come out of my mouth again that's my troll face if you could go anywhere in the

world

where you would go someone sees you in public like in the supermarket in the park wherever you are you want them to come closer and they greet you.

Do you find it intimidating when they are up high? yeah, what do you think when people stay up high and talk to you? Oh so it's because of your vision and when I'm so close you can see me, but when I'm high up you can't see me, yeah, are you able to see far? People need to look beyond their differences and look into their soul in their heart because it is the biggest heart you will ever know in this world. It makes you happier OMG, who is this twisted beast? I play with her. I love her.

I don't like picking up poop, so my parents do that, but I look for opportunities. I have a prostitute. What is the best thing about being a dog mom? about me yes she takes care of me when I'm sick yes, what are some things that make you sad? Wow noises so she likes my face fiction, will you be able to enjoy the present without worrying about the future? 100% of course the future is always there, but we can do something, but you said it perfectly, I know, but we see, we are talking about the same thing, well said.