“I am extremely proud to become an Ambassador for DEBRA Australia, an exceptional volunteer based charity organisation, dedicated to children and families affected by Epidermolysis Bullosa (EB).
Like any new parent, my greatest wish for my baby was for her to be healthy. Fortunately, thankfully, she was. But for many little ones, this isn’t the case. For babies with EB, they are born with skin so delicate that the slightest touch can make them blister and peel, an incredibly painful condition that has been compared to living with constant third degree burns. It requires around-the-clock care and has no cure.
Not only is this a devastating illness for a small child to endure, the impacts on their family are profound and heartbreaking. The daily care of these children is intense and demanding, and often very distressing – many EB children need pain medication to simply have a bath. The everyday play activities we take for granted, like kicking a ball around in the park or having a swim in the ocean, are out of the question.
Because EB is such a rare condition, families can struggle to find the support they so desperately need. DEBRA Australia is the only organisation solely dedicated to EB sufferers and their families. They train and employ specialised EB nurses in Victoria and Queensland, with hopes of expanding the team nationwide; provide education and support services for both families and health professionals; are working towards an adult transition program and annual camps for the children; as well as supporting ongoing research into the condition, better treatments and a possible cure.
And DEBRA Australia does all of this on essentially the smell of an oily rag – a handful of extremely generous private donors, grants with no direct government funding. But it’s not enough.”
– Tasma Walton
Matt Bevilacqua is an Australian Ironman and DEBRA Australia Ambassador who also suffers from EB Simplex. Despite struggling with the condition Matt’s Ironman career has been a rollercoaster; first competing in numerous state teams for Tasmania and when he was just 16 years old Matt became the youngest person at the time to win the Tasmanian Open Ironman title and went on to win the race three years in a row. After completing school Matt chose to pursue his dream of becoming an Ironman and moved to Mooloolaba to train with the Michael King Ironman Academy.
Two years after his move Matt achieved his dream and made history by becoming the first ever Tasmanian to qualify for the Nutri-Grain Ironman series. After finishing 9th in his debut series last year Matt finished 7th in the 2014/15 Nutri Grain Ironman Series which qualified him for his third straight Series in 2015/2016.
As a child growing up with a family history of mild EB Matt became aware of the impact EB has on lifestyle and participating in sporting teams and other events. Matt feels privileged to be an ambassador for DEBRA as it will allow him opportunities to raise the profile of the disease, raise money for research and to meet children and families who courageously overcome the daily challenges of EB.
Kate Moloney is a professional Netball Player and DEBRA Australia Ambassador. Kate has been playing for the Melbourne Vixens since 2013 and was part of their victory in the 2014 ANZ Championship. Her passion for Netball has gained her many achievements in the sporting world such as the 17/Under Nationals MVP, Captain of 19/Under Victorian team, Vice-captain of 19/Under Australian team and in 2014 competed in the Fast 5 World Series for Australia.
Kate decided to come on as a DEBRA Australia Ambassador after she was fortunate enough to attend the Tough Tilly day in Echuca this year and she was touched by the strength of this beautiful little girl. She would like to create more awareness about Epidermolysis Bullosa – this devastating illness and the around-the-clock care and support these families need. Kate would like to help raise the profile of the disease for ongoing research, better treatments and one day a possible cure.
Brock is a role model, he’s popular amongst both young and old age demographics and most importantly, has a voice. Brock is energetic, dedicated, disciplined and first and foremost kind hearted.
When Brock met Eliza Baird who lives with EB, they instantly connected which means he is connected to our cause at DEBRA Australia. Brock is also personally connected to the Wilkes family – the Wilkes family have had a huge involvement with DEBRA for the past few years with their daughter Tilly being diagnosed with EB. Corey Wilkes (Tilly’s father) created The Cotton Ball which is held every two years in Melbourne to raise much needed funds for EB services.
John Platten is a former Australian rules footballer and DEBRA Australia Ambassador. During his time in the AFL John carved an illustrious career – first, winning a Magarey Medal in 1984, then with the Hawthorn Hawks team of the late 1980s and early 1990s winning four Premiership flags as well as a Brownlow Medal.