Bohring-Opitz Syndrome Receives International Attention
Bohring-Opitz Syndrome (BOS) has been gaining international attention this past week. Carrie Hunsucker, Co-Founder of the BOS Foundation and her daughter Hazel, were the subject of a video produced by the popular Special Books by Special Kids.
Chris Ulmer, founder of Special Books by Special Kids, interviewed Hazel and her mom as part of his video series featuring neurodiverse individuals. Ulmer, known as Mr. Chris, made an extraordinary connection with Hazel and said it was “one of the most beautiful moments of my entire life.”
During the video, Mr. Chris communicated with Hazel and every time he provided her the opportunity to respond, she would alternate the patterns of her clicks and responses. She made eye contact and reached for his hand when he said "hello." She then squeezed his finger multiple times to further their communication.
Carrie said, "At first I was hesitant to reach out to Mr. Chris for an interview. I warned him that Hazel was nonverbal and didn't communicate. Seeing him find ways to communicate with her during their short time together warmed my heart and gave me hope for a future in which Hazel can connect with me and others through her own means."
The interview demonstrated when you treat someone with dignity and respect they will be more open to communication. By reinforcing Hazel’s attempts at communication, she continued to respond. Mr. Chris noted, “Because I’m coming from a place of positivity and acceptance, she embraces me”
The video was broadcast on Facebook, along with other social media platforms, gaining over 380,000 views on Facebook alone.
Special Books by Special Kids is a global multi-media movement that spreads empathy, understanding, and acceptance for neurodiverse individuals. Mr. Chris’s popular video series highlights the joys, needs, and struggles of the special needs community.
The BOS Foundation would like to thank Mr. Chris and his staff, along with the Hunsucker family, for sharing this important story and raising awareness for BOS.
You can view the video on Facebook here or YouTube. Please consider liking the Special Books by Special Kids Facebook page by clicking here. You can also find more information on Mr. Chris's organization here.