About Me

Hello! 

Welcome to my website! My name is Elena. I'm in my early teens and I live in Washington State, and I have Goldenhar Syndrome.  Here is a little bit about me, my story and about Goldenhar..

First, Goldenhar affects mostly the face and upper spine area – for some kids, some organs are affected. In my case, I have 2 hemi-vertebrae, and a keyhole pupil in my left eye, I had a malformed ear (me and my parents called it Squiggle because it looked like a squiggly line) before I had it reshaped. My jaw was partly missing when I was born, and had to be recreated using rib bone. Because of the differences of Goldenhar, it also isn't fully growing so when I was a baby, I had distractors which moved the bone after the surgeon severed it so  that it would grow longer and into its proper place. But before my doctors could do the distractors, they had to do rib numerous grafts. One of the rib grafts was a bilateral rib graft (grafts on both sides of my jaw at once)!

Also I have many more rib graft surgeries to go, and probably at least one more distraction. Believe it or not I have had to about 18 to 20 surgeries in total. And also when I was born, my jaw was so small, that my tongue was in my throat, so I had to have a “trach” (a tracheostomy tube) to be able to breathe. But thanks to my jaw distractions, my tongue was far enough out that I got my trach out when I was 4 years old.  I also have a G-tube (short for gastronomy tube) which allows me to gain weight at an acceptible pace compared to if I was only eating by mouth. So yeah, that is the basics of Goldenhar.

Anyways, here is a little bit about my life. I live in the Seattle area. I have four dogs. One of them is my Royal Frenchel service dog Tuki. My favorite sport is swimming. I go to a homeschool with a 8 year old, a 5 year old, and a 4 year old. I love eating (which is odd for someone with a G-Tube like I have because people with G-Tubes often grow up thinking eating is a gross sensation, since they often haven't done much “eating by mouth” as we call it.)

Yeah that is all. Hope you peeps enjoyed! Bye!