CHANGE
YOUR STARS
Treacher Collins Syndrome
ABOUT US
Growing up my mom would say to me "Change Your Stars", she wrote this at the bottom of every letter when I was away at college, every note, every birthday card. She had dreams for me beyond what was imaginable.
When thinking about a name for this website, "Change Your Stars" was an obvious choice.
Hunter was born on November 1, 2020. The pregnancy seemed to be healthy and the prenatal genetic testing came back normal, we had no concerns for our little Hunter. We just couldn't wait to meet and hold him. Once we got him in our arms we immediately fell in love with everything about him. When he was born we noticed some facial differences that we asked the doctors about.
Doctors dismissed our concerns. After Hunter failed two hearing tests in the hospital we were referred to an audiologists a month later and were told it was probably fluid in the ears. We saw a handful of pediatricians, ENT and Audiologists. We told each of them our concerns and questioned if the underdevelopment of the ears correlated with the failed hearing tests.
We didn't know anything about hearing loss and didn't think Hunter could be affected because, we had no family history of hearing loss in our family. For 2.5 months physicians kept saying, "We think he can hear but we aren't sure. Come back in a week to see if his canals opened any." I decided to research our concerns myself and after 10 minutes of going down a google rabbit hole I discovered a picture of a child with Treacher Collins Syndrome (TCS). I immediately knew Hunter has TCS once I saw this picture. We reached out to a local medical university where they confirmed features of TCS and wanted to see him immediately. A few months later Hunter was diagnosed with TCS with a random mutation on the TCOF1 gene.
Hunter was almost three months old when we first visited a Craniofacial Team that was knowledgeable on TCS. Even with a team of doctors explaining what Hunter's future may look like we still felt lost. The future continued to look blurry, we didn't know anybody else with TCS and never even heard of TCS prior to his diagnosis. We felt like we were in a sinking ship and had no idea what to do to help our little guy thrive.
Hunter is now 3 years old and after many long nights of research and finding the resources he needs, Hunter is thriving. Most of these resources did not come from a physician and came from fellow TCS parents or other parents within the disability community.
We realized how hard it was to find resources and even more so that resources are different between each state. We decided to build a website that offers all the resources we know of in South Carolina for families with Treacher Collins Syndrome. We hope this will not only help South Carolina families but will also be a guiding resource for families outside of our state. Many of these resources are applicable to all families with disabilities.
A diagnosis does not determine your future. We are here to help change your stars by providing a one stop place for all the resources you need to learn about Treacher Collins Syndrome and thrive with those resources at your fingertips. The future is incredibly beautiful and we can't wait to watch your family change their stars.
To learn more about Hunter and our family follow us on Instagram @the_extraordinary_hunt.
In Friendship,
Drew, CJ, Jackson, Hunter and Austin