I am thrilled to revisit our series “This is Treacher Collins” today. With the movie Wonder rapidly approaching, I have spent quite a bit of time reflecting lately on what it means to me to be a part of this community. When the team of doctors strolled into my hospital room and told me Landon had “what they thought to be” Treacher Collins Syndrome, I asked them to repeat their words about three times. When they followed the diagnosis with other even more foreign words to better describe it- microtia atresia, craniofacial, distraction osteogenesis- I remember vividly feeling more lost than I’d ever felt before. That loss of control and intense desire for answers led me to eventually seek some sense of community. Amazingly, Facebook provided the answers I thought I could only find from the medical community. Parents from all over the world were there to happily answer questions, while always taking the time to remark how beautiful they thought my baby was. In their stories and advice I not only found answers, but also probable timelines, a way of organizing my worrying and most importantly I found hope. My goal in sharing these amazing families’ stories is to pay that hope forward in any way that I can. To share more “me too” stories as well as shine a light on how every family- syndrome of not- is just like these families. As we continue to spread our message of kindness, spending time with these stories and sharing them with your children will make the story of Wonder even more real and even more important. Please enjoy meeting Jaxon today…
- Tell us about your family!
We are family of 4. Jason ‘dad’ works for a gas/oil production company, Nikki ‘mom’ is a Kindergarten teacher, Kaleigh Rae ‘big sis’ is going into 4th grade and Jaxon Vance ‘lil brother’ is going to be in Kindergarten. Jaxon is all boy!!! He hits the ground running in the morning and doesn’t stop until he slides sideways into bed at night. He is our comedian that keeps us rolling. Kaleigh is his ‘other mother’ and the best big sister that we could have ever imagined for Jaxon.
2. Did you know your child had Treacher Collins Syndrome (TCS) before he/she were born?
Nope. We (the 3 of us) went in for our 20 week ultrasound to see the gender and do the anatomy scan. I remember Jason jumping out of the chair when they announced it was a boy. Then the tech turned to us and said there was something she needed to tell us…but couldn’t until the doctor came in. He looked over the ultrasound and told us that Jaxon would have some facial abnormalities. So for 2 weeks that’s all we knew. Then we started the 3D/4D ultrasounds every 2 weeks. Our doctor could only tell us that Jaxon would have a pretty extensively wide cleft lip and palate. Of course that was news we didn’t plan to hear, but we quickly accepted it and made plans on how to help him once he was here. On the day Jaxon was born Jason handed him to me and said, “Momma, he doesn’t have ears.” At this point I knew there was more to Jaxon’s story than expected. Shortly after we were scheduled to visit our Craniofacial team in Austin and they confirmed the diagnosis of TCS.
3. What has your experience with TCS taught you as a parent?
We are better- better parents, better people, better Christians, better friends. In whole, we have become a better family! This experience, our life, has taught each of us that even though we may have struggles and hard days from time to time because of TCS, we can get through anything together. Jaxon has taught us patience and acceptance of differences in ourselves and others.
4. What is the most common misconception about TCS, or what would you like others to know about the syndrome?
We tell everyone we encounter that our story of Jaxon is an open book. We encourage people to ask questions. Our philosophy is ‘Knowledge is power’. We would much rather talk about Jaxon and answer questions than have the awkward stares. Kaleigh has done an awesome job with this. When another child encounters Jaxon and ask about his BAHAs she is quick to tell them that God gave Jaxon little ears and the doctors gave him these ears. We have learned that as soon as people start asking questions they quickly realize that Jaxon is no different from any other 5 year old little boy.
5. What is one thing you’re most proud of so far in being a parent of a child with TCS?
Since adding Jaxon to our family, we have been blessed to randomly meet some really good people. Our community has shown us so much love and support. Jaxon has more friends and “fans” than we could have ever imagined. We have had complete strangers come up to Jaxon and visit or stop us to tell us how awesome he is!
6. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?
We are excited about the book/movie. First off, we LOVE Julia Roberts and we know that any awareness of TCS that will come from this will be positive for us and everyone like us. We definitely plan to see the movie! We would love to fill a theatre with all of our family and friends to experience it together!
7. Is there anything else you’d like to share with us?
Jaxon is strong, handsome, funny, caring and athletic. He gets attention because of TCS but he makes people fall in love with him quickly. He is resilient and has a personality bigger than Texas. We can’t imagine our life without our little guy.