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In May, Mater little miracle mum Gillian will be taking part in Miles for Miracles: Japan 2019, a trek following Japan's Nakasendo Trail to support research into therapies shown to reduce the risk of adverse neurodevelopmental outcomes in babies born prematurely. Here, Gillian shares her story.
It was with excitement and anticipation that we awaited the birth of our twins—due early June 1998—but is was replaced with fear and trepidation when I gave birth to them on 17 February at just over 24 weeks—Jack weighing 810 grams, and Grace 723 grams.
After their birth we were told that they had around 50 per cent chance of survival and that the risk of them experiencing mild to significant disability was high. At that point we were just happy for them to be alive! Jack, however suffered a brain haemorrhage on 18 February and did not survive the day.
For the next 92 days I spent my waking time with Grace on the rollercoaster that was our nursery journey—made bearable only by the excellent care and expertise of the medical, nursing and allied health staff. Grace was fortunate enough to be included in several research projects being undertaken in the Special Care Unit at the time, one of which has improved the understanding/practice of pain management for pre-term babies. It is only through such research that we can make changes that positively impact quality of life for babies and their families.
I am very fortunate in being funded and supported by Mater Mercy Super to walk the Nakasendo Trek in May. By participating in this amazing trek, I've committed to raising $6,000 to support Mater's research into sulphate therapy, which has been shown to reduce the risk of adverse neurodevelopmental outcomes, such as cerebral palsy, in pre-term infants.
Never a day goes by that I don’t think of our loss of Jack and give thanks for the “Mater little miracle” that is Grace—given the amazing, full life she is living, against what at times seemed like overwhelming odds.
Please help Mater's researchers help other families like us by giving whatever you can to my Miles for Miracles fundraising page. Every dollar counts, and the more we can raise together, the greater chance we can give to all precious babies. Thank you!