Losing your 14 year-old son in the middle of the night with no symptoms or signs of illness is hard to fathom.
Tragically, this was the exact situation faced by Joanne Kupsch a year ago, when she couldn’t wake up her son Bobby.
Unbeknownst to everyone, Bobby was suffering from a rare inherited heart-muscle disease called arrhythmogenic right ventricular cardiomyopathy.
Since then, his family has committed to raising awareness and funds for the Heart Foundation.
The family were invited to attend St Kilda’s open training session on Monday at Linen House Centre, and met Saints skipper Nick Riewoldt.
“The disease is very prevalent between elite athletes and anyone between the ages of 1-35,” Joanne told saints.com.au on Monday at the club’s open training session.
“The only reason we actually found out he had it was we were genetics tested and he tested positive for a protein called DSP.”
Bobby was a normal teenager; he loved cricket his X-box, St Kilda Football Club and was also a volunteer at the local CFA.
“He was gearing up for his season in under 15s down at Crib Point on the Mornington Peninsula.” His father Robert Kupsch said.
“He was footy training twice per week for four weeks and was fit and healthy with no signs of illness ... He had no symptoms whatsoever.”
Bobby’s association with the Saints goes back two generations; with his grandfather Bob Kupsch playing 22 games for the club in 1957 and 1958 after crossing from Collingwood.
“The illness is preventable,” Joanne said.
“You have a pacemaker fitted and that could save your life. The reason why we want to raise awareness is we would like every small baby to have a heart scan for an enlarged heart.”
To donate, head to: http://www.heartfoundation.org.au/supportus/donate/pages/welcome.aspx
