Bryson’s Story

Bryson is 13 years old and was diagnosed with WHSUS in the fall of 2023. He was born at 34 weeks and was preemie, but other than being tiny, was healthy. He was the best baby. He slept very well and rarely cried. When began to notice that he was not reaching typical milestones during his first year. He didn’t walk or talk until he was almost two years old. Along with having developmental delays, he also had speech and language delays, low muscle tone, fine and gross motor delays, sensory issues (mainly with loud noises), exotropia (had corrective surgery at age five), and scoliosis. He has received speech, language, physical, and occupational therapy since he was three years old and continues these today. When Bryson was ten years old, his right shoulder blade began to noticeably protrude. We were aware of his scoliosis but had only been keeping an eye on it up until this point. His s-curve had rapidly progressed, and was causing other health issues. He had spinal fusion surgery in the summer of 2023. After lots of extensive testing after surgery, we now know that his scoliosis progressed rapidly due to his weak muscle tone. His genetic testing revealed the POGZ gene mutation, which led us to White-Sutton syndrome. This testing also revealed that he is no longer producing growth hormone, and will be starting growth hormone therapy soon. As others have mentioned, we knew there was always something there, but didn’t quite know what it was. This diagnosis finally gave us an explanation for not only his health concerns, but some of the quirky behaviors he has always displayed as well. Bryson has done so well, continues to be his happy-go-lucky self, and we are so incredibly proud of him! Bryson is a social butterfly and loves talking to people. He enjoys playing outside, camping, riding his 4-wheeler, swimming, going to the beach, playing with hot wheels, and going to car shows. While we are fairly new to WHSUS, we look forward to learning more through this organization and are thankful for the other families who have shared their stories as well!