ZAVIER'S STORY

Zavier is 5 years old and lives in Sydney Australia with his parents & older brothers Will & Elijah. 

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Although Zavier is non-verbal he can communicate in a variety of ways and is recently having success with assistive technology. 

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He loves music, swimming with his brothers and started school this year which has been a smooth transition for him.

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Zavier also loves cause and effect toys and can spend hours entertaining himself independently. 

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He is exceptionally cute and even though this journey has not been an easy one for us, it has been rewarding. 

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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).

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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.

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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.

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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!

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After many years of early intervention such as Physiotherapy, Occupational Therapy and CME, Zavier started walking when he was 4 years old. 

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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.

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Born: 2015

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Varient Type: De Novo

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Clinal Features: Cafe-Au-Lait Spots, Mild Scoliosis, Global Development Delay, Non Verbal, Metopic Craniosynostosis, CPAP & Nystagmus.