The People I Find: Treacher Collins Syndrome

I introduced you to Katie last week, she shared her adoption story. I wanted her to share two different stories because they are ones you do not hear very often. She is your typical teenage girl. Her life experiences don’t necessarily fit the “norm” of the teen years. She doesn’t just deal with acne and mood swings, she has had to deal with facial reconstruction. Many times in her writing she states, “why me?” Katie, I want to tell you it is because God knows you can handle it. He never gives us something that we can’t handle. He knows how strong you are. You have become such a wonderful example to many around the world. Katie was back in the hospital last night for the unbearable pain she continues to suffer from her infection, for all of my readers out there I hope you keep Katie in your thoughts and prayers. If you want to leave her comments of encouragement I will pass them on 🙂

Here is Katie’s Unknown Story:

“I travel the road less traveled, sure it’ll have bumps along the way; but hey that’s life!” This quote is literally my life in one sentence. Last week I posted on how I was adopted as a “special needs” child. I’ve had so many surgeries and so many trials in my short 18 years of life that I’ve hit rock bottom and have struggled to make it to where I am now. I have a syndrome that isn’t all that common; it’s called Treacher Collins Syndrome or as I refer to it, TCS. It is a syndrome where the face doesn’t have as much bone as it should… So I don’t have cheek bones, a very low density mandible, no ears (well now I have prosthetic but that’s a whole different story) and many other complications. Everything below my neck is completely normal it’s just may face. My brain is normal. I am a senior in high school about to graduate, I am not the top of my class, but I am average.

1 June 2011 PhysicalThere are so many stories that I could share with you but I think I will share talk about my time in Ohio. So in 2011 my parents and I decided that it was time to do some more invasive craino-facial work, we had decided this through much fasting and prayer, the only place that we felt it could be done was at the Cincinnati Children’s Hospital in Ohio. The Christmas before the surgery was to take place we traveled to Ohio to visit with Dr. Gordon. We wanted to check everything out to see if this was the right fit. We got the feeling that it was right. As the next few months played out I have looked back on the decision wondering if it was just me trying to make my parents happy or if it’s what God had planned for me because of what happened next.

My first surgery was June 1st 2011, after that surgery my life was awful. I literally thought that I would rather die than go through what I was going through. We did a jaw distraction first which is where they break your jaw and put pins in. So every day your turn the pins to lengthen the jaw. We had to replace those pins three times because of complications. And if that wasn’t tortures enough we had to use what’s called a RED device which was a halo on my head that had ten screws against my skull and it was used to bring up my jaw so it could be eventually matched up with my upper jaw. After that we wired my mouth shut for a couple of weeks. It doesn’t sound all that bad as I’m typing it but as I was going through it I thought I was dying every day. I couldn’t sleep, I had to be g-tube fed, pain all the time I was on high-end medications, and I felt so alone.

the HaloOhio was one of the darkest moments of my life. I made friends at the Ronald McDonald house that I will always have but it’s not the same as having your friends from school come visit you when you’re sick. I spent so many nights lying in bed wondering why I had to go through this, why couldn’t I have my friends here, why, why, why? I became depressed. I wouldn’t leave my room, my parents had to force me out but even then I was sulking in my own little world. Since no one knew the pain I was going through I thought why should I keep moving? It got to the point that before I went into surgery I would secretly pray that I would die so I wouldn’t have to go through any more pain. Finally, I realized I was forgetting one thing. God, the creator of me, and the only person in the whole universe that knew what hell I was going through at this time.


Halo 2So I started reading my scriptures, praying and actually trying to be a happier person. I saw a change in my perspective I was leaving my room to go play video games with my friends or watch movies. I was going to the mall, for me that was a big achievement. I was becoming me again. I was going out in the world without giving a crap what others thought. I thought that I could get through all the stuff that I was going through. I was even Face Timing my friends and family! But then another huge blow came and I’ve been suffering from it ever since.

For my latest surgery my parents decided to do more of a cosmetic one, add cheekbones. They did some work on my eyes, and a tiny nose lift, since my nose was pretty flat. So I felt good, and I was ready to do this so I could go home. Home was the only thing on my mind; it was literally the only thing keeping me from going insane. I was so close yet so far. So we went ahead with it just to get it over with and let’s be honest I wanted that nose lift…

The day after we did that surgery my life took a turn for the worse again and I haven’t fully recovered from it. I got an infection. A couple of days of antibiotics wouldn’t clear this up, but they attempted anyways and I got to go home!!! The infection they thought they could cure with a few pills turned into a full-blown infection I mean like I had to get a PIC line placed and multiple surgeries to try to clean it out along with hyperbaric treatments. During all this I started saying why again. Why all this? Why couldn’t God just let me go home and rest? I thought I deserved it for heaven sakes.

These past two and half years have been the hardest I’ve ever had to deal with. I’ve hit low points where I didn’t want to get out of bed, I just wanted to lay there and not eat and just slowly die. I would only get out of bed because of doctor’s appointments and to shower. It seemed like every time I would go to the doctor’s office I would just get more bad news. No one knew how to help my pain. So I started dreading going to the doctor, I would beg mom to cancel and let me just lay in bed. I would go to school act like nothing was wrong and pretend to be okay with all that was going on when in reality I was dying inside. Sometimes I would lose it and break down and just sob and my friends would try to comfort me. But how to do you comfort someone who is past the point of patience with God, and with life?

lifeSeminary, scriptures, friends, and EFY are what saved me. Slowly, ever so slowly I started reading my scriptures on my own, because I had a friend challenge me. I started actually paying attention in seminary I wouldn’t go off and day-dream. I would try to find the scriptures and try to understand them. I started realizing that I had the best support from family and friends that anyone could ask for. They were patient with me when I wanted to be alone; they would be there if I needed someone. I grew to appreciate it, slowly but surely. Over time my testimony of God started to grow, it’s still shaky and I still have a hard time with everything but its growing still. I was able to attend EFY, a LDS summer camp, and I believe it really helped me get through all this. I got to spend the entire week learning all about Christ. Everything was centered on Him. I had the chance to spend time studying and asking questions about Christ without worrying what others thought. I learned things that I can’t even begin to explain.

This gospel is so true guys. I wouldn’t be here if it weren’t for it. I’m still shaky on some things but slowly and surely I’ll get strong in those areas. Before I went to Ohio I found a scripture that explains my situation so perfectly it’s almost scary. It’s in Doctrine and Covenants 121:7-9  it has become my favorite scripture and has continually guided me. Remember no matter how hard life gets, never give up. It will get better.

Here is my blog so you can follow me there 🙂


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