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Father And Daughter Battle Rare Facial Condition | BORN DIFFERENT

[Music] in my family i am the first case with treacher collins syndrome we had chloe and chloe was fine and then we had aryasha do you like taking your ears off to sleep yeah why is that [Music] you know i have tricha collins a bit of a different face treacher collins is a birth syndrome that affects a couple key chromosomes genetically craniofacial defects which can include microscope i i have prosthetic ears eyesight hearing i don’t have cheekbones tear ducts all sorts of cranial facial deformities that are different and of course that’s something you’re born with and of course the advantage for me is it’s uh it makes you extremely memorable no one has ever ever forgotten my face but thankfully it does not affect your mental aptitude or your physical aptitude my ears are magnetically attached and i take them off every night to sleep or when i go swimming or when i play in the lake so so sometimes it’s like being mr potato head you know i gotta go to the water go to bed and take myself apart i can take my hearing aid off yeah so i was born in 1984 and so the knowledge about treacher collins syndrome was very new there was really no community there was no facebook so growing up i would get what’s wrong with your face for me i always fell back on self-deprecating humor to make light of this situation so when i met dwayne i did not know anything about treacher collins syndrome i just knew his face looked different i just realized that everything that i liked about him about his personality and his character all of that came from his life experience growing up with teacher colin syndrome so if he didn’t have treasure colin syndrome maybe he’d be like a total jerk and then i wouldn’t like him we’ve been married for nine years there you go you married this funny face [Applause] in my family i am the first case with treacher collins syndrome so there’s no genetic condition before my birth and it’s our house and right now this picture is the room we’re in we had chloe and we had her ultrasound like 20 weeks you know we did ask the ultrasound tech like does she have ears and cheekbones and the tech is like yeah and fingers and toes so we’re like no seriously like does she have cheekbones like can you actually look and everything looked fine and chloe was fine and then we had ariasha like i guess because we’d like been there done that it like wasn’t even in our minds [Music] i was just really thankful when arya was diagnosed like that she had dwayne to look up to and we knew you know we knew everything that he’d been through she does really well like navigating the world with hearing loss [Music] basically if she’s not wearing her hearing aids i just have to talk like an angry man and she can hear me it’s mostly purple for context i have 70 hearing loss so i have to wear a hearing aid otherwise you’re yelling at me speaking you know at my face and i try and read your lips i don’t know if arias has noticed that she’s different she’s noticed that i’m different which is concerning to her she’s been trying to sell hearing aids to me but how are you hearing with no hearing aid because my ears work she’s like like there’s no way so she’s pretty convinced that her and dada have like super hearing and the rest of us are totally missing out how do you feel about your hearing aids good good you like them how do you like the headband good good do you ever feel funny yeah do you like taking your ears off to sleep yeah yeah why is that yeah because then i don’t hear growing [Music] talking [Music] yeah so this is arias’s collection of headbands from that i made for my daughter and then recently just because of the face mask issue i’ve been adding little ear savers onto the headband that you can hook the face mask on it was my idea to just try selling them and see if see what happens you know so i make custom headbands with like velvet lining so it stays on really well and it’s also soft and comfortable a lot of color options so the kids can match their outfits i think it helps kids confidence a lot when they’re able to wear a headband that they like there we go looking good there anna [Music] and i can just walk to the playground i wouldn’t say i’m concerned about aryasha being bullied just being knowing i’ve been bullied it it it’s gonna happen that’s just part of life i think it’s giving her the tools to handle bullying when it happens there’s a lot of that staring why do your eyes look so funny or what’s wrong with your eyes why does she have those two things on her head chloe is just so confident and bold so she doesn’t mind jumping in and answering questions and helping her sister [Music] the lava monster oh my gosh and your ear fell off and my ear fell off i think it’s really important for people to understand that everyone’s different um in this day and age right it is mostly just learning to tell your story there’s nothing more powerful you
Video source: https://www.youtube.com/watch?v=1oGsEygt4vM

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