Tuesday, July 2, 2013

Nathaniel Newman and Treacher Collins Syndrome

From: Deena S.
Sent: July 2, 2013
To: undisclosed recipients
Subject: Fw: Nathaniel Newman and Treacher Collins Syndrome

Nathaniel Newman and Treacher Collins Syndrome
So I got home after a hard day of work and having a belated dinner I finally hit the couch and turned on the TV to stare at it mindlessly to clear my mind a little and give it some rest. So zapping through the channels I happened to tune in to National Geographic's taboo. The episode today was titled 'ugly'. I haven't been able to find the full episode on nationalgeographic.com yet but it might be available online later. Let's be honest for a second: We all have our ideas of what is ugly and what not. I know I'm no supermodel and at times I might consider myself ugly. We all know someone we consider 'ugly' or, at least, not attractive. The episode 'ugly' does an excellent job explaining the concept 'ugly' and what reasons one might have to consider someone ugly; across cultures, genders, believes, you name it.

NGC describes and shows Ugly, a modeling agency, and describes it as: "... shines a light on beauty prejudices and takes the insult out of the word". I would like to apply that description to this specific episode as well as it applies just as well to the episode as the modeling agency. It beautifully shows that we all have our prejudices and confronts us with that fact. So as I was watching the show, a section about Nathaniel Newman came by. An eight year old boy, I guess he'll be nine or ten by now, born with Treacher Collins Syndrome. I can go into the specifics about the disorder but the Wiki page will tell you all you'll want to know, and more, about it as will friendlyfaces.org and many more. In short, Treacher Collins syndrome is a condition that affects the development of bones and other tissues of the face. Nathaniel (pictured here) and his parents Russel and Magdalena are interviewed and tell horrific stories about people ignoring Nathaniel on the playground or even running away. And no, I'm not talking about kids exclusively but also adults here. I do understand, and know from experience that (young) kids might react to their instincts and, as Russel states in the episode, that is, or should at least be taken as, a great teaching moment for parents to take the time and explain to their children that Nathaniel should be treated equally as any other kid. It was heart shattering hearing Russel tell the story of finding out on an old calendar that Nathaniel's brother had, in some time span like a school year, been invited to twenty-something parties and Nathaniel had been invited to none in that same year.

My heart broke when he told they had even met an adult telling Nathaniel "your face is scary". I was dumbstruck at the ignorance of people interacting with Nathaniel and coping with his disorder. And as if everything wasn't depressing enough, it was shown that Nathaniel had, at the time of filming the episode, undergone 20+ surgeries and some 15 more to go in the future. This kid has had a real struggle, from the moment he was born, in life and so much more to overcome each-and- every day. And yet, there he was: an adorable boy captivating my attention. Newman family (photo used with permission) Danu and Luca (left to right) Nathaniel and his brother, shown above. Nathaniel is dark haired, curly, dark eyed and his brother blonde and appears to be younger and, apart from the fact that Luca doesn't have TCS like Nathaniel does, they could have been a copy from one another. The resemblance struck, although it might just be my imagination. So in my mind I imagined what I might do if I encountered Nathaniel on a playground. I, honestly, couldn't imagine myself doing anything other than treat him as any other kid and, upon noticing he would be left by himself by other kids, urging my kids to go and find out if he'd be interested to play with them. I'd walk up to him myself and invite him to come play with us. How can anyone not like a kid like Nathaniel?

How can anyone be scared by such a boy? I can't begin to imagine what would be missing from, or have gone wrong in, someones education or upbringing to confront such a boy with a phrase like "your face is scary". During the section about TCS and Nathaniels story I had a real emotional ride; I felt anger towards the ignorant people, I felt deep respect for Russel and Magdalena, I felt compassion for Nathaniel. I had about every known emotion in just under 15 minutes. I was smiling ear-to-ear and giving thumbs up to Nathaniels parents on explaining why they chose to do no more surgeries with the sole goal of reconstructing Nathaniels face to a, what society would call, more 'pleasant face' and only opting for surgery that would improve his life medically (for example improving his breathing, hearing or sight). Go Russel! Go Magdalena! Go Go Go! I was with them all the way. Each and every decision the parents told about they made along the way made perfect sense to me and I kept giving my thumbs-up and smiling as if I was cheering for my favorite team. And then, Nathaniel. Man, I wish he would live on the same continent so we could 'drop by' some time just to give him a high five and a hug. To let him know how awesome he is and how much I admire him.

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