ZAVIER'S STORY
Zavier is 5 years old and lives in Sydney Australia with his parents & older brothers Will & Elijah.
Although Zavier is non-verbal he can communicate in a variety of ways and is recently having success with assistive technology.
He loves music, swimming with his brothers and started school this year which has been a smooth transition for him.
Zavier also loves cause and effect toys and can spend hours entertaining himself independently.
He is exceptionally cute and even though this journey has not been an easy one for us, it has been rewarding.
Zavier had failure to thrive when he was younger. We believe this was a result of him being peg fed for a number of years as he had difficulty swallowing due to his low muscle tone (hypertonia).
When Zavier was born he was diagnosed with Craniosynostosis. Craniosynostosis is a rare condition in which an infant has an abnormally shaped skull after the cranial sutures fuse early.
Despite two corrective skull surgeries and also a lung lobe removal due to a benign cyst called a CPAP Zavier has been an overall healthy child.
One interesting fact is that Zavier is tall! It seems a majority of our HUWE1 children are short in stature so we are intrigued by this!
After many years of early intervention such as Physiotherapy, Occupational Therapy and CME, Zavier started walking when he was 4 years old.
Napa Centre in Sydney was where Zavier did a majority of his intensive therapy and we had a great deal of success with this. Napa Centre is also in LA, Boston and Austin in the US.
Born: 2015
Varient Type: De Novo
Clinal Features: Cafe-Au-Lait Spots, Mild Scoliosis, Global Development Delay, Non Verbal, Metopic Craniosynostosis, CPAP & Nystagmus.
