As I mentioned in a post last month, I’ve decided to branch out beyond telling only our tale and instead feature some of the amazing families I’ve been lucky enough to connect with whose children have Treacher Collins Syndrome (TCS). With the movie Wonder coming to theaters this fall, I feel incredibly passionate about trying to highlight the real stories of Wonder. While the book and movie are things our community are incredibly supportive of, there’s nothing quite like the real tales these families have to tell.
TCS may be the reason we have all connected, but just as the syndrome does not define our children, nor does it does define what connects us. Our first family is a beautiful example of the kinds of parents I’ve met in the last few years. They are passionate advocates and champions of their daughter, but they also have passions of their own, and lives that have nothing to do with the syndrome. These are regular families all lucky enough to have a child that is changing the world in his or her own unique way.
The first family I’ll be introducing you to is Cassidy’s family.
- Tell us about your family!
We are a family of four, Dad is Jeremy, a 47-year-old General Manager of a well-established restaurant, Mom is Eva, a 37-year-old photographer who specializes in capturing images of newborns and toddlers. Cassidy is an adorable, bright almost 5-year-old girl who has TCS and Cameron is a 2 ½-year-old boy who is in to everything and always on the go. Our family also includes three feline fur babies named Keeker, Cali and Monkey. We live in Massachusetts.
- Did you know your child had Treacher Collins Syndrome (TCS) before he/she were born?
We found out after Cassidy was born that she had TCS. Our OB/GYN team did not pick up the telltale signs in any of Eva’s ultrasounds. Eva couldn’t wait for her next scheduled ultrasound to find out the sex of Cassidy so we went to a clinic in Boston to have an ultrasound done. The clinic did 3-D ultrasounds for an extra fee and gave us a preview of it. All that we saw during the preview was Cassidy’s back turned toward us.
- What has your experience with TCS taught you as a parent?
What was at first perceived as a devastating blow to us was really the greatest gift from God to us. Cassidy’s TCS has definitely made us more cognizant of what truly is important in life.
- What is the most common misconception about TCS, or what would you like others to know about the syndrome?
We feel the most common misconception about TCS is that those who have it are mentally challenged as well.
- What is one thing you’re most proud of so far in being a parent of a child with TCS?
That at a young age Cassidy has accepted herself and acknowledges her differences and that God made her that way.
- 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 so excited that a movie of this magnitude is coming out and love that schools have the book on their reading requirement lists. Should there be a film premiere for it here in Boston, we will definitely go to it with Cassidy.
- Is there anything else you’d like to share with us?
We truly believe that Cassidy serves a special purpose in this world and is here to do great things. We imagine that she will follow in Jono Lancaster’s footsteps and be an advocate for children with TCS. She is an old soul, so much so that Daddy calls her his “little old lady.”
Thank you for sharing dear Eva!
Here is an amazing video featuring Cassidy, and done by the phenomenal folks behind Special Books by Special Kids:
Video care of Special Books by Special Kids: http://www.specialbooksbyspecialkids.org/
To learn more about TCS, craniofacial differences and to even make a difference yourself in one of these child’s lives please visit the following sites:
Look At Us: https://lookatus.org/
Children’s Craniofacial Association: http://www.ccakids.com/