Alysa was born with TCS, and bilateral Microtia-Atresia. Treacher Collins Syndrome is a rare genetic condition that affects the way the face develops; it is estimated that it occurs in approximately 1 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 9 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 it has been a humbling experience, we want the best for our children and my biggest fear was for her self-esteem and confidence to be shattered when she started high school. Although she has a solid support system at home, as parents we worry. She tried out for Pageantry her first-year in high school and that has been the best thing that could have ever happened to her. She is part of the team, she feels accepted, she gets along with everyone on the team, she has had a positive experience and is well-liked, and they treat her no differently. Being on the team and being part of something, just 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, it 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 help girls 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. She has sat on many Earicles Microtia Atresia Conferences patient-panels with her surgeon Dr. Lewin.
Alysa always enjoys talking to other children about her “ears” and her experiences with the surgeries. Alysa as the “Big” kid is able to provide comfort to the little ones looking to her for guidance, just like she feels when she meets others that are older than she is, a few weeks back she met a young lady with TCS while we were at a Cologuard competition, Alysa was so thrilled to meet her, not only did they share TCS, Microtia-Atresia, bone-anchored hearing aids, but the passion for Pageantry, this young lady not knowingly was a big inspiration and role model to Alysa. Over the years Alysa has met other role models that are doing great things and advocating. For these reasons I feel it is important to be part of communities that understand you, that is why we have attended events and hosted a picnic for Microtia Atresia families through Ear Community, we have been to many events and camps with California Hands and Voices and along the way we have made so many friends and we are lucky to call them family. I feel that all these supports and interactions have helped shape her to identity who she is and taught her the importance of connecting with others. It has made her more confident and the ability to answer questions about herself or to be able to tell her story to anyone that asks it has helped her become more accepting of not being like everyone else.
Living with facial differences can be very challenging, not only dealing with surgeries, multiple doctor appointments, but also socially and emotionally, but she has managed to not let her differences define her, She is a happy teenager enjoying high school doing what she loves most colorguard, going to school dances with friends and getting good grades. We are so proud of her and what she has accomplished. I am grateful we have been fortunate to have such incredible support along the way and will continue to advocate on her behalf and to keep paying it forward. Alysa hopes she can be a role model one day for children with facial differences and within the dhh communities. I hope that anyone with facial differences or dhh can find similar support, remember you are not alone, You’ve got this!