Maddox’s Story

31 Jan 2021

When Maddox was around 20-months-old, his grandmother Heilala noticed he wasn’t displaying normal development behaviours.

He became extremely sensitive to certain sounds and became overwhelmed in confined spaces. He was referred to The Children’s Hospital at Westmead where he was officially diagnosed with Achondroplasia (a form of short-limbed dwarfism), autism and sensory processing disorder.

“When he was first diagnosed, I was upset and it was devastating for the whole family. He wasn’t just diagnosed with one condition but three so it was a lot to take in. After a few weeks passed and we came to terms with it, I felt more relieved because we had answers and we could seek out the services to help me care for his condition,” Heilala said.

Maddox visits The Children’s Hospital at Westmead regularly for speech therapy, occupational therapy and sleep study. He has endured multiple blood tests, MRI’s and x-rays that have become part of a routine. Although some days can feel overwhelming, the family have adapted their lifestyle for Maddox and wouldn’t want it any other way.

“We can’t do or go to places that are not suitable with Maddox’s needs but that’s ok. We live for him first before anything else,” she said.

Now as a two-year-old, Maddox has developed a huge personality and never fails to bring a smile to the face of anyone around him.

“He is daring and a go-getter. His energy is completely out of this world and it is hard to keep up with him sometimes. His favourite food is watermelon and he loves the outdoors – it’s hard to get him back inside”

“Maddox has the best team of professionals supporting him with all that he is going through. I am so grateful for all the love and support we have from everyone at the Hospital because I honestly cannot imagine where we would be if we didn’t have this Hospital to turn to,” she said.

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