60. When “earning your ears” becomes literal

60. When “earning your ears” becomes literal

This is not my typical tell-all entry (I’m still drafting my next one), but I urge you keep reading.

A friend shared this with me on Facebook today. A little girl with Treacher Collins Syndrome wants ears so she can look like the rest of her peers. Her family is seeking help funding her surgery. My family knows all too well the costs involved with craniofacial reconstruction. My mom refers to my face as a “million dollar face” because of the numerous, money-draining operations I’ve had over the years. We were lucky to have had constant insurance to help cover the medical care, but if you don’t (or even if you do) you’re likely willing to sell your soul just to be able to pay off the relentless bills.

As a child, I never wanted a single surgery. I dreaded visiting my reconstructive surgeon every October and cried each time an operation was scheduled. I just wanted to be a kid like the rest of my friends. When I was with them, I generally didn’t notice a difference between my features and theirs, but if I did, my ears never seemed to be the focus. I like that they’re small and pliable and can hold all of my piercings. My ears are just part of what makes me unique.

Right, I needed little ears to make me unique...
Right, I needed little ears to make me unique…

Though I may not have wanted my operations as a youth, today I received such a blessed statement showing me that my fourteen surgeries have in fact impacted my image. I sat on the table in my orthopedic surgeon’s office babbling on about Treacher Collins, knowing full well this was the doctor’s way of distracting me from my first ever cortisone injection. After the shot, he asked me if I was finished having surgeries because clearly I didn’t need anymore. BAM! Mission accomplished (thanks to my reconstructive surgeon, Dr. Anthony Wolfe, and my parents for forcing me to go under the knife).

Me and my BFF
Me and my BFF

Too many people can’t afford to correct what a genetic mutation leaves behind. I am one of the lucky ones. My life is forever changed by the surgeries I underwent. I’m no longer under constant control of my syndrome. Danae deserves to know how amazing that feels. She hasn’t had her chance to be freed from ignorance yet. At only six, she knows what she wants: ears. If you can help in any way, please support Danae’s wish on Go Fund Me.

Help Danae earn her ears by clicking here!

4 thoughts on “60. When “earning your ears” becomes literal

  1. You are so beautiful! Even though you have obviously been through a lot, it is sweet that you can relate to this little girl. Thank you for being an example of sharing other’s burdens!

  2. Hello,
    Thank you for the article. My family and I have donated twice and we are praying for this wonderful young girl. I went and looked up the original poster of the go fund me account on facebook and found no image or info on the young girl Danae. I am all for helping those in need. Do you have verification of who they are? I figured I ask since you did a great work up. Thanks

    Dillfamily

    1. Hi there! I was hoping to hear back from someone in the media who has been a big supporter for Danae. Sadly, I haven’t heard anything so I can’t verify who they are. I do hope it’s a legitimate account as well. If are are ever looking to donate to someone with Treacher Collins Syndrome again, please look up Julianna Wetmore. We shared the same doctor so I can absolutely get confirmation about her situation. She also had a show about her on TLC “Born without a Face” that aired maybe five years ago? Sorry I couldn’t be of more help!

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