Caleb is a sweet boy who was officially diagnosed with CTNNB1 syndrome in 2018 by the genetics team at UPMC Children’s Hospital of Pittsburgh at the age of 3. While the journey to finally have a diagnosis was not easy, we finally felt like we had a reason for why he was not developing and progressing properly. All of our questions had finally been answered, yet we still continue to have so many more questions as Caleb continues to grow. Caleb currently lives in the Pittsburgh area with his parents, Kevin and Crystal, as well as his older brother Carter and younger sister Rylee.
He is currently enrolled in our local public school as a kindergartener, where he receives specially designed instruction listed in his IEP. He absolutely loves school, his teachers, and his peers! We are blessed to live in a district that supports students with special needs, and therefore he has been provided with physical therapy, occupational therapy, speech therapy, a bus monitor, and a paraprofessional, all of which have helped him make great great strides towards his goals and development. In addition to school therapy, he also receives outpatient therapy with Children’s Hospital of Pittsburgh as well a few times per week.
Caleb has also been involved in a special-needs baseball organization known as the Miracle League, and he is also involved with an equine therapy program with Riding for the Handicapped of Western Pennsylvania. The volunteers that help with this program have such a heart for children with special needs, and he has made a great connection to his horse Snickers.
Caleb loves to play with his siblings, and as I see them interact on a daily basis, I am so thankful that my children are all able to grow up together. His siblings are so helpful to him, and I believe this will help them developed a deep love and appreciation for people who have special needs. Along with great siblings, Caleb is blessed with an enormous amount of family members who continually pray for, love, and support him. Our family’s faith has remained strong as we trust that Caleb will move mountains one day. He has a purpose, just as all of our children do. We will be a family that will never stop raising awareness of CTNNB1 syndrome in hopes of educating the world around us.