Connective Issues Fall 2025

Stickler Syndrome: A New Chapter of Connection, Support, and Resources

Before Lissa Elkins and her husband welcomed twins in 2019, their life was busy but “ordinary,” juggling kids’ activities, school, playdates, and work while managing a blended family and small business in Tennessee. “The day Leo was born, everything changed,” said Lissa. “While one twin was healthy, the other couldn’t breathe lying on his back or latch to eat. A malformed jaw caused his tongue to block his airway, and he was born with both a hard and soft cleft palate.” At just two weeks old, Leo, the only boy in the family, underwent jaw distraction surgery so he could breathe and eat, with a palate repair to follow. With no family history of similar issues, his medical team referred Leo to a geneticist. Based on his craniofacial di ff erences and early signs of hearing and vision loss, Stickler syndrome was suspected and later confirmed through testing. “This news was a complete blow at the time,” she said. “This syndrome was not hereditary for us. So, I just dove right into the only thing I could control at that time: researching relentlessly and getting him every possible support. ‘Mama lion mode’ was activated!” Despite her research, Lissa wasn’t prepared for the progressive nature of Stickler and the multitude of challenges that have a ff ected Leo’s airway, palate, hearing, vision, joints, growth, and development. “Each stage brings a new specialist, new information to absorb, and new decisions that carry

 The Elkins family: Leo with parents, Lissa and Taka, and sisters

real consequences for his health and future,” Lissa explained. “The hardest part is that no one

hands you an instruction manual on what to do. Each decision has lifelong implications, and it’s overwhelming, exhausting, and at times terrifying.” On top of caring for Leo, Lissa was also balancing the needs of her other four children. The isolation she felt was profound, not having met other local families living with Stickler. Social media became her lifeline, helping her connect with families worldwide. She also participated in many online seminars on connective tissue conditions, which led her to connect with the Foundation. “Before Leo, I didn’t have anyone in my life with a syndrome or special need. Now I see so clearly the value in our di ff erences. Behind all the medical visits and challenges is simply a little boy who wants to play, laugh, and be loved just like any other kid. He has to work so much harder at the things most people take for granted, and yet he does it with the biggest smile on his face.” ~Lissa

 Baby Leo with twin sister Noa