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Photos and videos for #treachercollinsawareness

5 Week Post-op: Life is returning to normal. I am completely off of my pain medication except for ibuprofen throughout the day. I have been in a weird in-between funk where I feel that things are not as they should be yet, but also know that I have recovered a lot and am not anywhere near where I was. I am at a point where I am ready for my next surgery, but it is too soon to operate. I want things that didn’t go as planned to be fixed, and I am eager to hear what/when my next surgery is. Something I have not yet talked about is my temporary partial face paralysis that has sent me in a bit of a depression. I cannot move my forehead, the right side of my face, or my eyebrows. I cannot squint, wink, or fully close my eyes. I will go to make a facial expression and my face will not move. This has been extremely difficult for me to deal with because I am a very expressive person and always have been. All of this is supposed to return back to normal, but it has been hard to just be patient and wait and see. Despite all of this though, I am trying my hardest to just push through and focus on my natural business coming back for Christmas and also announcing a huge project I have actually been working on for more than two years! I am so excited to share it! Thank you so much for all the support! You are all amazing! 💗 #tcs #treachercollins #treachercollinssyndrome #wonder #wonderthemovie #tcsawareness #treachercollinsawareness #jawsurgery #2020WonderBoy

129 13 Nov 3, 2017

Awesome day spent at Christ Church primary school delivering one our love.myface workshops. I spent the whole day there sharing my journey and answering all there questions! We covered topics such as, #bullying and what to do when it happens #fostering #adoption #acceptance to others and yourself #attitude #words and there power And how today, tomorrow and everyday for the rest of your life, you can be a villain or a superhero to those around you just by the words and actions that you are responsible for! The kids where totally on board and so many shared there own stories and thoughts with me too. #antibullying #loveyourself #education #raisingawareness #lmlmff #treachercollinsawareness #tcs #treachercollins #schools #baha #hearingaids #fostering #adoption #acceptance

242 1 Oct 6, 2017

Repost from jonolanc TopRankRepost #TopRankRepost More connections in Boston. More stories shared. More friendships made. More 'your not alone' #loveyourself #treachercollinsawareness #treachercollins #tcs #travel #education #raisingawareness #antibullying #usa #lmlmff #yournotalone #friendship #boston

33 1 Jul 14, 2017

More connections in Boston. More stories shared. More friendships made. More 'your not alone' *Note, these are not my kids, these are kids that I've visited in hope that they don't think there the only one living with treacher collins. And also don't ever believe or listen to the negative comments that are/have/will get thrown at them. #loveyourself #treachercollinsawareness #treachercollins #tcs #travel #education #raisingawareness #antibullying #usa #lmlmff #yournotalone #friendship #boston #messyhair

26978 637 Jul 14, 2017

Throughout our lives we meet so many people along the way, this lot have left a mark on me that will stay with me forever. #treachercollinsawareness #loveyourself #tcs #baha #hearingaids #friendship #lmlmff #travel #treachercollins #reston #cca

2321 34 Jul 4, 2017

Keinginan dan harapan kami untuk semakin memperluas kepedulian terhadap anak-anak dengan kelainan langka, satu persatu mulai terwujud. Hari ini, Rabu, 25 Januari 2017, kami baru saja selesai melakukan pengambilan gambar dengan pihak JakTV untuk program acara Kata Dokter "Best Friend Forever" Pengambilan gambar dilakukan di SD MARSUDIRINI - Parung dan RS Medika Dramaga - Bogor, mengangkat kisah Odilia, anak dari Yola Tsagia, yang memiliki kondisi spesial berupa Treacher Collins Syndrome (TCS). Keseluruhan kegiatan ini juga didampingi oleh dr. Widya Eka Nugraha. Kami akan segera mengabarkan jadwal tayang dari seluruh proses hari ini. Jadi, pastikan stay tune terus di seluruh akun media sosial kami ya.. Salam rare, Langka Nyata Berdaya #treachercollinssyndrome #jaktv #katadokter #bestfriendforever #indonesiararedisorder #raredisease #supportraredisease #supportraredisorder #treachercollinsawareness #TCS #langkanyataberdaya

30 2 Jan 28, 2017
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