DHH Plus
Growing and Thriving with TCS
By Anel Herrera, California H&V
My daughter, Alysa, is like any other busy teenager in high school. She was also born with Treacher Collins Syndrome and bilateral Microtia-Atresia. Treacher Collins Syndrome, or TCS, is a rare genetic condition that affects the way the face develops; it is estimated that it occurs in approximately one in 50,000 live births. Microtia is a birth defect that occurs 1 in 10,000 live births, and Atresia is absence or underdevelopment of the ear canal and middle ear structures. She has had over nine surgeries, years of orthodontics, and speech therapy in school. She has moderate to severe hearing loss and wears bilateral bone-anchored hearing aids.
As a parent with a child with facial differences, we have had a humbling experience. We want the best for our children and my biggest fear was that her self-esteem and confidence could be shaken when she started high school. Although she has a solid support system at home, as parents we worry. She tried out for Pageantry her freshman year, and that has been the best thing that could have ever happened to her. She is part of the team, she feels accepted, and she gets along with everyone on the team. She has had such a positive experience and is well-liked, and they treat her no differently than anyone else. Being part of something and being on this team brings so much joy to her. She loves it. That is a blessing!
Although she is part of the team, and is very confident, it is important to her to meet other people with similarities. She says this makes her feel stronger and braver knowing that she is not alone. She has been involved with “Girl Talk” at Children’s Hospital in Los Angeles. It is an arts-based self-esteem workshop established by The Art of Elysium to improve coping skills, address anxiety, self-esteem, communication, empowerment, and positive self-image for girls with craniofacial differences. She has met so many incredible people through this program.
Alysa always enjoys talking to other children about her “ears” and her experiences with the surgeries, but it took some getting used to. Alysa as the “Big” kid is able to provide reassurance to the little ones looking to her for guidance, just like she experiences when meeting young adults with similar challenges. Recently, she met a young lady with TCS while we were at a color guard competition, Alysa was so thrilled to meet her. Not only did they share TCS, Microtia-Atresia, bone-anchored hearing aids, but also shared a passion for Pageantry. This young lady, unknowingly, inspired Alysa to go even further. Over the years, Alysa has met other role models that are doing great things and advocating for themselves. Alysa could see herself in these people, within communities like the California Hands & Voices camps, the picnic we hosted and events we attend with the Ear Community, and many others. Along the way we have made many friends and we are lucky to call them family. I feel that getting to know role models and attending these events have helped shape her identity, who she is. Alysa loves connecting with others now. I see her answering questions about herself with confidence and insight and to be able to tell her story to anyone who asks. She has sat on many Earicles Microtia Atresia Conferences patient-panels with her surgeon Dr. Lewin. These role model experiences have helped her be more accepting of how she stands out in the crowd.
Her life is not all rainbows: living with facial differences can be very challenging. She has dealt with not only surgeries and multiple doctor appointments during her childhood but also faced social and emotional challenges. She has managed to let her character and her gifts define her and not her differences alone. She is a happy teenager enjoying high school doing what she loves most: color guard, going to school dances with friends and getting good grades. We are so proud of her and what she has accomplished. I am grateful for the incredible support we have found along the way. We will continue to advocate on her behalf while she does the same and keep paying it forward. Alysa hopes to continue to be a role model for children with facial differences and within the deaf/hard of hearing communities. I hope that anyone with facial differences or who is deaf/hard of hearing can find similar support. Remember you are not alone. You’ve got this! ~
Editor’s note: The author is a Board member with California Hands & Voices. We welcome articles illuminating any aspect of D/HH Plus experience.