Patient Stories

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Timaru youngster hits milestones against the odds

Luca Fassbender and his mum Jaclyn Smith at home in Timaru. Photo provided courtesy of Fairfax Media NZ/Timaru Herald.
Luca Fassbender and his mum Jaclyn Smith at home in Timaru
photo by Fairfax Media NZ/Timaru Herald

Timaru Herald

When Luca Fassbender was born 13 weeks premature, weighing just 810 grams and suffering 24 different medical complications, his parents didn't know what the future held for him.

"It's so hard to believe now how small he was and what he's been through", his mother Jaclyn Smith said.

Almost four years later, Luca, 3, is walking, talking, making friends at kindergarten and looking forward to celebrating his fourth birthday next month.

But it hasn't been easy, the young battler has spent more than 400 days in Christchurch receiving medical treatment.

Smith said her son had been born with chronic lung disease, which meant he needed to breathe through a tracheostomy tube in his throat, and global developmental delay.

He's also had a colostomy bag because of problems feeding and digesting food.

Luca spent the first 260 days of his life in the neonatal unit at Christchurch Hospital.

On top of that, Luca and his mum have also spent more than 255 days living at Ronald McDonald House, in Christchurch, while he has undergone various hospital treatments.

The youngster made it home to Timaru, for the first time, at the end of 2013.

Since then, Smith said his progress had been "quite amazing", especially in the past 12 months when he managed to reach a number of milestones.

"He's learnt about 60-odd sign languages, just from me teaching him and saying words. And, with having the tracheostomy removed, he's been saying more words since then ... and he started to walk last year.

"Walking was quite a surprise, it was quite amazing. He still had a walking frame when we started Kowhai Kindergarten, that really helped him, just to get around for a while.

"Then he just pushed it away at kindy ... and then started taking a few steps and then kept practicing, I think he just wanted the independence."

Given his start in life, Smith said her son's progress had been remarkable.

"We are so proud of him. he's a real character, everyone that comes across him falls in love with him.

"There's just something about him that people are attracted to, the journey's been hard work but it's all worth it when you see him reaching all these milestones.

"It's so hard to believe he's going to Timaru South School next year."

Luca's understanding of sign language was now so good, "I almost don't need to tell him", she said.

"I'd like to keep the sign language going, I think it's a good way to communicate. One day he might come across someone who can't talk."

Olivia

Olivia ridingMeet Olivia who is eight years old and is one of our first New Zealand SWAN members.

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

The first two years of Olivia’s life were spent searching for a diagnosis, a vast array of tests were undertaken. Olivia’s parents were told that that she may never walk or talk. At two years of age, Olivia couldn’t sit, she started walking at four years old, fast forward four years and Olivia is now running and making sounds.

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 Oliva’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 for Olivia.

Olivia and cat 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’. Angela says, “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.”

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. They also look at not having a diagnosis as meaning that Olivia is not put in a box and her possibilities are endless.

Two 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. Recently Angela had surgery on her arm and Bailey stepped up and helped Olivia when Angela couldn’t.

Olivia attends Sommerville School and is in a class of eight that caters to the needs of the children. Olivia receives physiotherapy at school, she goes horse riding once a week and swims twice a week.

“Never take what you are told as the end, keep looking, nothing is permanent and things change.” ––Angela

Olivia swimming