Kym Treharne (nee Hornibrook), Kirsten Shaw, Christie Kozlik (nee Cerabona), Sara Stockman (nee Retief), Fiona Culley (nee Coates) and Charlie Culley have banded together to ditch vanity (and pain thresholds) to raise money for the Heart Centre for Children based in the Children's Hospital at Westmead. A charity whose research will benefit heartkids across Australia, and the world.
Fundraising commenced in December 2015 and since then various fundraising activitiies have occurred. In April, Kym, Kirsten, Christie, Sara and Fiona all shaved their heads and poor Charlie underwent a chest wax in the spirit of giving (compliments of Irvin Day and Ella Bache, Wagga Wagga). Christie, and her mother, organised a successful movie night in June. Now we are all looking forward to our final event, a 'Bald and the Beautiful' Spring cocktail party in Wagga Wagga to bolster our efforts 17 September 2016.
Below is some explanation and the particular projects that the money raised will go toward. For Fiona and Charlie this is particularly personal, with their son Hugh having a severe heart condition (having only one ventricle). His most recent operation was in February 2016 (the Fontan operation). It was his sixth heart-related procedure and fourth open heart operation.
During Hugh's second last stay at The Children's Hospital (in 2015), Fiona and Charlie learnt that the purchase of essential surgical equipment, such as a Heart-Lung Machine, required charity donations. It was mind-boggling to think that a machine that was used so often and was a necessity to the survival of precious children was not 'a given'. The knowledge provided the impetus to start raising money to aid the Heart Centre for Children, a Centre which was so integral to the lives of many children with Congenital Heart Disease (CHD).
Apart from contributing to the purchase of equipment, two other projects are being supplemented knowing that they will benefit at least 3 other Riverina kids/adults that have had the particular life-saving Fontan procedure that Hugh underwent (and inevitably there will be more). One study relates to the quality of life of single-ventricle children, something that Hugh's family are experiencing first-hand and their friends are witnessing. The other study looks at the long-term impact of a Fontan circulation on the body. All of these projects have a wide reach, particularly the research which will be shared globally.
Hugh has had some close calls in his short life so Fiona and Charlie are very thankful to have their little boy home, and it is especially good that he is now feeling not so tired and puffed out all of the time.
So a very special thanks to the others who have joined them in their fund-raising crusade, including the communications extraordinaire Annabel Bowcher (nee Hill, for our Brisbane friends). It is a beautiful and selfless thing that you are all doing.
The heart would normally have four chambers (2 upper atrium and 2 lower ventricles) yet there are some kids who are born with only half a heart (the left or right side) or three-quarters of a heart whereby they are missing the left or right ventricle. These kids (after previous open-heart surgeries) undergo a relatively new procedure called the Fontan procedure. Our fundraising efforts will not only benefit kids having open heart surgery at Westmead Children's Hospital with the new heart-lung machine and other necessary equipment but it will also help raise money for research relating to those children who have a Fontan circulation.
A new Heart-Lung Machine:
It is incredibly difficult to operate on a beating heart as you could imagine. A heart-lung machine replaces the heart and lungs to pump blood around a patient's body during open-heart surgery, which is absolutely critical to the procedure. If interested, you can read more about the heart lung machine or watch the video (if you're game!) at the website : http://www.heartcentreforchildren.com.au/heart-lung-machine-fundraising.html
The Heart Centre for Children are working with the Fontan Registry, the Royal Children's Hospital in Melbourne and the Murdoch Children's Research Institute on three major studies looking at patients with a Fontan circulation (a special kind of 'half a heart'), such as taking a close look at how patients' liver and kidneys are affected over time. So even though Single Ventricle (SV) kids, such as Hugh, are given a chance at life there are ongoing medical issues that need to be monitored.
A brand new study, called the Nurture study, undertaken by the Heart Centre's psychology team, looks at the quality of life of single ventricle (SV) patients compared to other cardiac patients. It is hoped that this study will show how SV patients can better be supported so that they can live a full and happy life.