It takes a special person to rise above the ordinary and create a legacy for the greater good.
Two dads within the special needs community are doing just that – inspiring local communities on the journey to create better awareness and raise vital funds to bene t others with similar disabilities. The stories of Sydney builder Frank Caracoglia and Tasmanian firefighter Chris Duffy are very different but they have one thing in common – a sheer determination to do everything they can for their sons and to raise the pro le of their individual causes.
Frank’s son Jacob was 18 months old when he was diagnosed with Angelman syndrome – a rare neuro-genetic disorder that a ects speech and mobility, and causes severe intellectual and developmental delays. Frank and his wife Joanne soon became involved with FAST (Foundation for Angelman Syndrome Therapeutics), which aims to improve the quality of life for ‘Angels’ through funding research, education, and advocacy.
FAST’s focus is funding for research into treatments that will improve the symptoms of Angelman syndrome and ultimately that will provide a cure. “When we became more involved with FAST, we found out how much funding was needed to help find a treatment or a cure for AS and since it is such a rare disorder, it wasn’t getting enough funding from other sources,” Frank recalls. “My wife and I decided we wanted to do more.” And, do more they have. Together they have raised thousands of dollars through different events. That figure is expected to rapidly increase as they consolidate a relationship with the NRL.
South Sydney Rabbitohs player Damien Cook and Canterbury-Bankstown Bulldogs star Sam Perrett are ambassadors for the foundation and the exposure from a recent segment on the NRL Footy Show has put Angelman syndrome in the spotlight. Frank recalls his persistence when initially trying to establish a relationship with the league’s stars.
“Well I was on a mission to get as many ambassadors as I could to achieve awareness,” Frank says.
“It first started out when Jacob had his first seizures and I had spoken to Damien Cook from the Rabbitohs about jumping on board with FAST and when he heard Jacob was at hospital he rang me the night after and told me he was going to write Jacob’s name on his wrist at his next game. “I was feeling very emotional with the support from Damien – he was a player from the club I had followed all my life so it was the greatest feeling I have ever felt. It felt like Jacob was running out on the eld with them and it was an amazing feeling.
“I wanted all the Angels and their parents to feel the same emotion, so I took names down of as many Angels as I could and every week I would give Damien a name to sketch on his hand. Sam Perrett followed suit and his position on the field ensured greater traction off it.
“He was a winger and a try scorer – every time he scored a try and the tv cameras were filming he would point at the name on his hand and it was broadcast on national tv and then everyone started talking.”
Social media played a role as Frank battled to ensure the player support translated into funds from fans of the game. He recalls tagging journalist and TV host Erin Molan in his posts for nearly a year and a half to get her attention. The persistence paid o . After a number of newspaper articles and more support from NRL players Sia Soliola and Curtis Rona, Frank finally got his big break.
“About a month ago I got a phone call from Damien saying that the Footy Show wanted to do a story about us. I jumped at the chance! “They came to my house and Damien and myself were interviewed by Erin Molan and we got a whole 10 minutes on the Footy Show and I felt so complete that I had achieved national tv and shed a light on Angelman syndrome and that I did what I had set out to achieve.”
The relationship with the NRL will be further strengthened when Souths will play Canberra during round 21, with Jacob to run out with the Rabbitohs and details about FAST to be promoted on the day.
“So the NRL has helped us get national coverage thanks to the help of our awesome ambassadors who are helping our special and beautiful children.”
Chris Duffy has taken a more scenic route to get exposure for his son Jack, who has cerebral palsy spastic quadriplegia. Jack has limited use of his arms and legs and is unable to communicate verbally.
Together with wife Erin, Chris has embarked on a number of different journeys to raise awareness about what can be achieved when children like Jack are given a helping hand.
In 2009, Chris kayaked from Launceston to Hobart via the East Coast of Tasmania paddling over 600km in over 13 days raising $70,000 for service provider St Giles, who have helped the Duffy family since Jack’s diagnosis.
In 2015, Chris carried Jack across Tasmania’s iconic 65km Overland Track with a support crew involving police, firefighters and a paramedic, as well as Tasmanian television presenter Rachel Williams, who made a documentary, Overland Jack (which aired on Southern Cross Television and is now available for view on YouTube) about the journey. Together the team raised over $30,000 for Life Without Barriers.
Last year, Chris and a group of supporters took on the world’s toughest half marathon, the Point to Pinnacle, with Chris pushing Jack in a special running chair.
“We have always wanted to do things with Jack while we have the chance – it will get more challenging to do some of these things as Jack gets bigger,” Chris says. “Early on we did a few fundraising activities to raise funds for special needs organisations that supported Jack and we have been extremely lucky to have developed the support networks we now have in place but we quickly realised others aren’t so lucky.”
The Duffys have recently established the Just Like Jack organisation and have gathered sponsorship and support to buy another five running chairs to help other special needs children like Jack experience the thrill of taking part in events.
The first outing was the Launceston Ten in June 2017. During this event six children with disabilities completed a 10km fun run thanks to their support team. The team will again tackle the Point to Pinnacle later this year with the aim of having five children in running chairs at the top of the Mt Wellington finish line.
As we go to print, the Just Like Jack team is organising a special launch party of the organisation, which has Hawthorn Premiership star Shane Crawford and Rachel Williams as ambassadors. “We expect to raise more than $30,000 to support the ongoing efforts of the organisation, which is really exciting,” Chris says.
“From day one we have been so overwhelmed by the support of people who understand our desire to give Jack and other children with disabilities the opportunity to be included in activities that many of us take for granted.”
“To see the smiles on the faces of the kids taking part in the Launceston Ten in the Just Like Jack running chairs, and hear the cheers of support from the crowds as we ran past was exhilarating. “We have lots of exciting plans for the future of Just Like Jack and the special group of people who are now a part of our lives as we keep breaking down barriers for people like Jack.”
Both Chris and Frank are extremely humble about what they are achieving for people with special needs.
Perhaps the best person to sum it up is Source Kids founder Emma Price, who is involved in both of their lives. Emma’s daughter Charlotte has Angelman syndrome and she is one of the Just Like Jack team. “Both Chris and Frank are so selfless. They are perfect examples of the great dads in the special needs community who go above and beyond to fight for their children and others in similar situations,” Emma says. “They make this world a little bit of a better place for all of us.”