Shine for Thomas Foundation
The Shine for Thomas Foundation is a registered charity which raises funds for awareness, support and research regarding a life threatening condition called rhabdomyolysis and a little know genetic cause in children - LPIN1.
The name of this Foundation comes from two little boys called Thomas who passed away within 24 hours of each other in 2010, without prior diagnosed history. One of these little boys was the son of Trudy and Andrew. Soon after, upon learning about another young boy called Hudson also being a sufferer, Trudy and Andrew knew that there were three Australian boys afflicted with this potentially deadly genetic condition within 30 days of each other. The law of probability suggested to them that it may not be as rare as they were lead to believe. They began a long search for answers to their questions, and so their Tom's passing began the series of events that lead to the Shine for Thomas Foundation.
The Shine for Thomas Foundation Inc. is a not for profit organisation managed by a voluntary management committee.
The Foundation was registered under the Associations Incorporation Act 1981 on 23rd December 2011.
It was granted Deductable Gift Recipient status from the ATO on 30 Jan 2012, meaning that all donations over $2 are tax deductible.
The Foundation was registered under the Collections Act 1966 as a registered charity on 8 October 2012.
HAPPY NEWS ANNOUNCEMENT
Good news. Andrew and Trudy Olive would like to announce the arrival of their new baby, Viola-Jean Olive in August 2014.
Testing was conducted for the double mutation of LPIN1. "Luck was on our side this time and Viola carries only one part (ie. she is a carrier only) and was born healthy at 4 weeks premature."
Testing was done at a Brisbane hospital via amniocentesis, and fluids sent to America for the relevant testing to occur. "It’s wonderful to think that diagnosed families have the opportunity to extend their family if they wish and have availability of technology to screen for the LPIN1 gene double mutation."
A positive test result for the double mutation is a whole other story, and a personal decision that families alone would have to make.