Olivia’s Story

Olivia’s mum and dad were first aware that things weren’t going smoothly when Olivia was six weeks old, and not gaining as much weight as expected with a newborn baby.

The first two years of Olivia’s life were spent searching for a diagnosis, including a vast array of tests. Olivia has never been formally diagnosed with a specific condition, though her parents were told that that she may never walk or talk.

Olivia’s mum Angela said that one of the hardest things to deal with initially was not knowing where to turn to ask for help. Most of the help Olivia’s family have received is because her parents have gone out and found the answers by navigating the health and education system to find out what help is available.

Angela said it has taken her and her husband a long time but they are at the point where they are comfortable without a diagnosis and have named it ‘the Livvy Syndrome’. “Livvy is a unique happy wee thing with an engaging character and we choose to live for today, we don’t know what will happen in two years’ time but we have her today and we don’t put anything off if we can help it,” says Angela.

Olivia’s parents have chosen to have a positive point of view. While Olivia may not be meeting the milestones of an able child, each and every one of her own milestones are celebrated, for example when she started walking at four years old. They also look at not having a diagnosis as meaning that Olivia is not put in a box and her possibilities are endless.

Four years ago, more blood samples were taken from Olivia and sent to Germany and the States for testing, however, no diagnosis was made. The medical team at Starship Hospital in Auckland have decided to hold off on further testing until more tests become available.

Olivia has a big brother Bailey who is 11 years old. According to his mum, Bailey is brilliant with Olivia and has so much patience.

Olivia attends Sommerville School and is in a class of eight that caters to the needs of the children. Up until this year she has been very restless and hard to get her to focus, with assistance from medication Olivia can now focus on activities.

Her speech has progressed from sounds about three years ago, to now being able to have three or four word sentences in conversations. Her words are getting clearer every day and with a little help most people are able to understand.

This year’s focus for Olivia’s development has been increasing leisure activities. Olivia started Special Olympics athletics and especially enjoys the social interactions. She’s not so keen on the running but is definitely improving. Olivia also started gym class and in combination with the other activities she was already doing Olivia is getting fitter and more active.