Meet Xavier

Born: 2006

Diagnosed: 2017

Xavier's Story: When Xavier's mother and rest of his family finally decided his behaviors were becoming problematic, the took him to Children's Hospital Psychiatric Ward. One of the doctors there took one look at him and decided to run tests for Cornelia de Lange Syndrome.

His experiences caused by the disorder have been overwhelming for both him and his family. While pregnant with him, his mother was told that he had a mass in his chest and told her that other states would allow her to abort. He was born with a right-sided diaphragmatic hernia. When he was born he was covered in thick black hair and still has a very hair back. He spent 4 months at Children's Hospital NICU. Xavier was hooked up to ECMO, a

machine which takes over for the heart and lungs, and had multiple surgeries before he was even 10 days old.

It was originally thought that he may have been on the Autism Spectrum, but because he played with bubbles and makes eye contact his family was informed otherwise. Instead, he was diagnosed with Attention-Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), and Obssesive Compulsive Disorder (OCD), along with a learning disability.

 

Xavier can be so loving and caring. He’s very imaginative and enjoys reading, being read to, and being told stories.

 

Xavier's mother was 17 when he was born, so his grandparents have been a huge part of his life and a crucial component to his and his family's support system. His family continues to research and learn what they can about Cornelia de Lange Syndrome, but they feel there are not many resources available.

Shortly after receiving his diagnosis, Xavier's younger brother, Zachariah was diagnosed with CdLS as well. To read Zachariah's Story click here.