Jeremy and Makayla Davis can only play sport if there is a defibrillator on hand.
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This is because both children and their father Micheal have what is called Long QT Syndrome- a heart rhythm disorder.
Long QT can lead to an increased heartbeat which can be potentially fatal.
The family only discovered some of them had the disorder two years ago after Micheal’s sister passed away.
After lots of testing, it was discovered the three had Long QT, as did other members of Micheal’s family.
Long QT is a genetic disorder which can be passed down through generations.
When they found out about the condition, both children were pulled out of sport.
Micheal said this decision had a negative impact on Jeremy and so they decided to allow him to play sport again.
“He sort of went through a lot of depression when we took him off all sports. That was one of the main reasons we got him back in,” he said.
“My daughter loves her dancing and the venues don’t hold defibrillators, so we’ve had to go down this path for them to be allowed to play and participate.”
The family had already bought one unit which cost them $2400.
On top of this will be ongoing maintenance costs and the pads will need to be replaced every three years regardless of whether or not they have been used.
But with two children playing sport in different locations each weekend, the logistics were impossible.
Dr Hart, who the family has seen for many years, suggested they speak with the Kollege of Knowledge Kommittee for Kids (KKKK).
KKKK president Tony Springett then got in touch with the State Medical Assistance (SMA) who were able to provide an unused, second hand defibrillator for a reduced price.
SMA director, executive CEO Ben Cant presented the unit to the Davis family in Bowral on February 20.
Both parents said they were extremely grateful to both the KKKK and the SMA but hoped both units would remain unused.
“It’s a situation where you have it and never want to use it,” Micheal said.
While it is a condition that is relatively unknown to the public, Micheal said there were thousands of Australians that could have Long QT and not know about it.
He, Jeremy and Makayla take beta blockers every day to slow down their heart rhythm and manage the condition but there is no known cure.
Mum Pamela said she would like to see all schools and sporting clubs equipped with defibrillators in case of emergencies.
“I think the schools really need to look at having these machines. But at the moment we’re alive and we’re lucky,” she said.
People do not need much training to use the defibrillators as the unit tells them what to do and Micheal said it would not shock someone if there was a heart rhythm.
“So you can’t shock somebody by accident.”