A NATIONAL organisation to support families with babies born prematurely was launched last weeks thanks to a dedicated and computer savvy-mum.

Julia Toivonen, 28, of Wantirna, worked solely on the National Premmie Foundation website – www.prembaby.org.au – and finished it last Thursday. The foundation was formed by six groups, including Melbourne’s Lifes Little Treaures, which Mrs Toivonen represents.

She also created the LLT website – www.lifeslittletreasures.org.au - and is in charge of maintaining the sites. She said the NPF would provide valuable support to families across Australia. “NPF will help people form their own support groups, provide information and interesting articles for parents to read, and raise funds for important research.”

Mrs Toivonen said many families caring for children with special needs were not aware that help was available. She knows only too well the difficulties a family faces after her son, Ronan, was born prematurely 18 months ago. He spent 100 days in hospital and had many complications, including chronic lung disease.

Crawling and walking are milestones in a child’s life, but for Ronan each one has proved a challenge. “He can crawl, but he can’t walk without something to hold onto”. The young battler has just started being able to sit comfortably after regular physiotherapy sessions.

Throughout her son’s development, she became motivated to help people in a similar situation and started a group called L’il Aussie Prems eight months ago. She also created a website dedicated to Ronan with pictures and updates on his progress.

He might not be able to walk unaided until he is two, but Mrs Toivonen has learnt to be patient.

Written by Will Wright – The Knox Journal

Something is wrong i said to my husband Mark, 29 as searing pain ripped through me. “I think the baby is coming”. It was mid March 2006 and i was pregnant with my first child, but at only 27 weeks along we weren’t expecting our bundle of joy just yet. But it didn’t really matter if we were ready or not because the very next morning our son, Ronan, was born prematurely.

Nothing could have prepared us for this sudden arrival… or the length hospital stay that ensued. Poor Ronan spent the next 110 days at Monash Medical Centre in Melbourne with chronic lung disease and other complications. It was a very difficult time for Mark and I. As my family lived in Sydney, I found a lot of our time was taken up calling relatives to keep them updated on Ronan’s progress. I’m going to start a web journal, i said to Mark. That way our family and friends can log on at any time to see how Ronan is doing. I got started and found the process quite therapeutic. www.totsites.com/tot/ronantoivonen

I was a long-time user of the internet. In fact that was how Mark and i met and we’d been together for eight years and married for three. As well as recording Ronan’s day-to-day progress, i began gathering information about premature births. I was shocked to discover there was very little information available for Aussie parents of premmie babies. There were plenty of overseas websites, but the majority of information and links were of no use to Australian parents.

`There’s not enough support for Aussie parents of prems’ i said to Mark after Ronan left hospital. `So i’m going to start a website just for them’. Several months later and i’d created my website, L’il Aussie Prems, at www.lilaussieprems.com.au. I loaded it up with all the information that i’d been searching for when dealing with Ronan’s premature birth. And i must have hit a chord, because it’s become a huge success. The forum has been particularly popular as it allows parents and family members to discuss issues and ask questions. I’ve been working extremely hard to get the word out and i’m so proud that Australian parents of premmie bubs now have a website that’s got all the information they need.

Article from issue #41 – That’s Life Magazine.