Meet Zachariah

Born: 2010

Diagnosed: 2017

Zachariah's Story: Zachariah was tested for Cornelia de Lange Syndrome after his brother, Xavier, received his diagnosis.

Prior to this, he was diagnosed as having Sensory Processing Disorder (SPD) and a learning disability. Due to CdLS he has bad vision in one eye and coarctation of the aorta. The coarctation was discovered during pregnancy and was closely monitored. It was originally thought he would have to have a shunt put in, but after spending 10 days in Children’s Hospital NICU, it was determined they would just monitor it to make sure it continued to grow with him.

He is so loving and caring. He loves to build with Legos and he's

really good at it! He’s very sensitive to other people’s emotions and it’s very important to him that the people around him remain and look happy. 

Zachariah's family has had trouble adjusting to having two children with Cornelia de Lange Syndrome. His mother feels there is an extreme lack of resources to get information from. The geneticist gave her a one page print out with only a couple of paragraphs to read. She receives a lot of information on Autism Spectrum Disorder to help her understand and work with Zachariah's behaviors.

Zachariah's parents and grandparents are supportive in trying to find ways to make things easier for him. Through learning more about CdLS, they are learning to accept that he will not wear certain clothes, doesn’t like new shoes, and won’t eat certain textures of foods. They work with him on reading, writing, and spelling. His team of teachers, along with his intervention specialist, work very hard on new ways to teach him ways to better understand. Zachariah goes to Speech and Physical Therapy, and continues to make progress. He has an amazing cardiologist who keeps a very close eye on his heart and his doctor at Children’s Hospital is amazing. He recently got a new Primary Care Physician who had never heard of CdLS, who is now taking the time to research it.

To read about Zachariah's older brother, Xavier, click here.