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Roy's story

Updated: Nov 24, 2022

Roy Jr is one of two children in New Zealand with rare chromosomal disorder, Testrasomy 18p, which affects many parts of the body and causes feeding difficulties in infancy, delayed development, changes in muscle tone, distinctive facial features, and other birth defects. Roy’s had to overcome many obstacles, he couldn't hear and was born with club feet. He had two operations on his feet and was in casts for the first three years of his life. He couldn’t sit up or walk because his muscles were not very strong and he suffered seizures. Roy's family say they would be lost without the support of the Middlemore Hospital's Kidz First at Middlemore, which was their second home for years.

Middlemore Hospital's Kidz First has been instrumental in Roy Jr’s care as well as supporting the family, who regularly attend the Kidz First Community Christmas Party organised by the Middlemore Foundation.

Roy's Mum Kaarin explained how important the party experience had been for her family saying functions are always set around abled bodies and Roy's ability to participate is limited. The Christmas party takes that away and its so easy for him to be apart of everything. He loves dancing and his face lights up which excited his family to see.

When I saw COVID had cancelled the 2021 party, I really felt for those parents that didn't get to experience it because to be in a room where people understand you and you aren't the odd one out is an amazing feeling. This one event changes lives and changes the way you see things. I'm really thankful to have been part of it!

These days Roy is attending full days at school, which is a milestone in itself, is in the kapa haka group and is very loved member of the iwi in this area. He used to use his wheel chair 85% of the time, he now needs it only 50% of the time.

“We are so lucky to have him at home now, but it was only possible because of the support from Kidz First and community nurses, which has been tremendous,” says Kaarin. “We have been in an out of hospital for much of our baby’s life. The nurses were there to help me as a first time mum, taught me how to feed baby through the nose, all the things that we needed to learn. Kidz First has a wonderful set-up and the doctors, nurses and staff have been amazing - they are like family to us. We 100 per cent trust them and if we didn’t have their expertise, I don’t know what we would do or where we would be. They have been on this journey with us and we are incredibly grateful.”

See more of Roy's story in the videos below

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