Luca’s Story

Luca was born 13 weeks premature, weighing just 810 grams and suffering 24 different medical complications. He has 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 digesting food.

It's so hard to believe now how small he was and what he's been through. Luca has spent more than 400 days in Christchurch receiving medical treatment.

Luca’s progress has been amazing, he started walking at kindy, learnt sign language and has hit a number of other milestones.

It has been one year and four months since the tracheostomy tube was removed and five months since Luca's last surgery to remove some skin around his trache hole site for the skin to grow and cover the hole. Luca has been talking so much since it officially closed three months ago. Myself and Luca's Papa cannot believe how much his vocabulary has progressed in such a short time. The things that he says at times brings so much laughter to our lives, he has a great sense of humour that's for sure! Luca is such a happy boy, we are so lucky.

Luca started at Timaru South School in April. As Luca tires easily, he has been doing half days but recently started two full days a week. Over time his hours will build up and eventually he will attend full days five days a week.

Luca is really enjoying being at school. He’s become popular within his classroom, the other children absolutely adore him as do other children around the school.

Since the tracheostomy has been removed Luca is eating a little bit more, only soft and dissolvable foods, usually only enough for texture experimenting and tastes as Luca is tube fed.

Our family got involved in a research study a year or two ago, the chances to discover any other information beyond the research were only 1% but they had a breakthrough earlier this year. We are waiting for more research to be done to find out if there is another child in the world with the same issues as Luca, or if a new syndrome has been discovered. Looking forward to hearing the results from the research.

We are so proud of Luca, 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.