Matias is a 7-year-old boy who was diagnosed with Goldenhar syndrome, a rare congenital condition that causes malformations on one side of the face, typically affecting the ear, eye and spinal development.
In Matias’ case, it resulted in him not having two matching ears. He also has bilateral profound deafness, a condition where he is unable to hear in both ears. Despite these challenges, Matias dreams of having two matching ears. His mom, Edna, has gone to great lengths to make her son’s dream come true. Through experiences, research and recommendations, she was led to Shriners Children’s Southern California from Durango, Mexico.
When they arrived at the center, Enda was welcomed with what she described as “warmth, humanity and professionalism of all their staff.” From the very first moment, she knew her decision to travel for her son’s care was the right choice. Matias’ and his mother met with plastic surgeon Caroline A. Yao, M.D.
Throughout four months, Dr. Yao listened and created a plan for Matias to yield the results they would be happy with. Dr. Yao performed lip reconstruction due to bilateral lip cleft, a condition where there is a gap or split in the upper lip, affecting the appearance and function of the mouth. She also performed nasal tip rhinoplasty, a surgical procedure to reshape the tip of the nose to improve both its appearance and function. Dr. Yao then performed the reconstruction of his left ear, a surgery that involves building up cartilage structure and using tissue to form a more symmetrical ear, which is not only important for his appearance but also his emotional well-being.
Creating videos for her family was the beginning of her social media growth. The videos were for Matias’ family, to visually take them along his medical journey. Capturing Matias’ spirit through the challenges made her think about all the families who were going through the same things. This sparked the inspiration to start publicly sharing these videos on social media. From vlogging their appointments at the center, to exploring Los Angeles, to educating people about Goldenhar syndrome, her content radiates love and authenticity throughout their journey. These videos reached over 1 million views with hundreds of comments from mothers all over the world.
With millions of views, Edna received heartwarming messages. The community of mothers going through similar experiences supported her videos, which led to conversations about his care at Shriners Children’s. Her goal was to encourage mothers to not give up, and let them know that better healthcare is available for their children.
