Family of toddler with rare disorder thankful for Kidz First

Latest News Wednesday 15 January 2020|The family of a three-year-old Manurewa toddler with a rare chromosome condition say they would be lost without the support of the Kidz First children’s hospital at Middlemore, which has been a second home to their family in recent years.

Roy Kaumavae Jr is the precious gift from a family friend that enabled his parents Kaarin and Roy Sr to complete their family.  Kaarin knew they were in it for the long haul even as the first signs of complications - when baby stopped growing in the womb - became obvious.

“We needed a strong foundation so our baby knew how much he was loved and wanted.  We were involved with the pregnancy right from the word go.  We went along for the scans, an talked to the family about the situation. We always knew we would adopt baby, it was a matter of working through the process with everyone involved,” says Kaarin.

“When I looked at my husband hold our little boy for the first time, it was wonderful.  It was one of those moments that you just don’t prepare for.”

The family’s journey has been a challenging one since Roy Jr was diagnosed with a rare chromosome disorder known as Testrasomy 18p.

The condition 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.

“Baby couldn’t hear and was born with club feet. He had two operations on his feet and was in casts for most of his life. He couldn’t sit up or walk because his muscles were not very strong and he suffered seizures. He’s had to overcome many obstacles,” adds Kaarin.

“Today he has some movement which is amazing, I read to him and we use sign language and picture cards to communicate. I know how frustrated he gets, but he is determined to keep learning and we’re incredibly proud of that.”

Kidz First Hospital 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 and regularly donate to the Foundation’s Jammies in June and Christmas Appeals.

 “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.”

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