Jul 19, 2022 / Scoliosis & Spine

Share Your Story: Oh, the Places You’ll Go!

Meet Beau, a patient who is seen by our team of multidisciplinary experts. Learn more about his journey below.

Blogs written by Beau and his mom, Courtney.

When Beau was 6 months old, he was placed in the Chinese orphanage system, and our family adopted him in 2017, when he was 4 years old. We did not know much about his history, as he lived in a very large orphanage and information was not passed along. We did know he would be somewhat of a medical mystery and booked his appointment with our pediatrician before we even left China. 

Beau is a complex patient, and after a variety of appointments and tests, he was eventually diagnosed with a form of dwarfism called spondyloepiphyseal dysplasia congenita (SEDc) and a monoallelic mutation of COL2A1 gene. This is a rare genetic disorder that impacts different parts and systems of his body, including his eyes, hearing, spine and more. 

In May 2021, Beau’s spinal curve rapidly started to increase, and that is when our orthopedic surgeon in Houston referred us to Scottish Rite for Children. We really love and trust our doctor in Houston, so it was very comforting to hear him say, ‘If my kid needed this done, where I’m sending you is where I would go. They are my number one choice.’ My anxiety as a mom went away, and I immediately started to research everything I could. We took the first available appointment and met Dr. Johnson for the first time at the end of June. She gave us a game plan for surgery, and we left with a sense of peace about the journey we were about to take with Beau at Scottish Rite. 

In January 2022, Beau had spinal surgery and was in halo decompression for the next five weeks. Halo-gravity traction is the process of using a metal ring, or halo, attached to a child’s skull that applies traction to the spine, gently stretching and straightening out the spine to correct curvatures. – Courtney 
I had so much fun in my halo, and my mom decorated my equipment, which made it even more fun! My walker was Mardi Gras-themed the entire time. I always had beads to hand out, and sometimes I even had a speaker playing Mardi Gras music! 

My wheelchair was first decorated as the emperor's throne, because of Chinese New Year, and I handed out handmade fortune cookies. I created all the sayings, and my mom made paper cookies. I even painted my face like a tiger, because we are in The Year of the Tiger. 

For Valentine’s Day, my decorations were full of hearts, lights and sparkles. I had a cool shirt that said, ‘Just call me Cupid’ and wore an awesome red top hat with heart glasses. My mom and I made over 350 valentines, and we handed them out around the hospital. I know that there are a lot of people that are needed to make hospitals run smoothly, and I tried to meet all of them. I wanted to remind them that they are important, and I was thankful for all they did during my stay. 

After surgery, I went home in a wheelchair. My farewell theme decorations were Oh, the Places You’ll Go! My mom said that this was a perfect theme to represent moving from China to the United States. Not only did I have to learn and adapt to a new world, but because of my spine surgery at Scottish Rite, I also have a new level of life, and nothing is going to hold me back! 

I feel like I will be able to do anything I set my sights on, thanks to different people at Scottish Rite. The Therapeutic Recreation department allowed me to participate in sports and games that I never thought I would be able to do. My size can make sports hard, but they showed me how I could fully participate with just minor modifications. 

When I was an inpatient, Ms. Dana gave me my very own Learn to Golf set of golf clubs, and we had a special visitor during therapeutic recreation - Mr. Carlos. He taught me how to play golf, plus he had a huge smile, was super nice, and has a special leg. We live near a golf course, and I have always wanted to learn how to play, but because of my size and my back, I never thought I would be able to participate. Mr. Carlos worked with me, and I learned how to make adjustments and was able to swing a golf club and hit the ball. After my big surgery, he even came to check on me. Learn to Golf will allow me to keep playing the sport and has connected me with special coaches, just like Mr. Carlos. 

I am now back home in Houston and feeling good. I will always remember Scottish Rite for Children, and I look forward to my checkups because I can visit my friends all around the hospital, and they always remember my name!! – Beau 



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