Erebus Motorsport Team Owner Betty Klimenko opened up her heart and her garage to 6-year old Xavier Kitchin and his family at last weekend’s Tasmania SuperSprint.
Xavier is one of seven in the world that has the rare genetic syndrome, HIST1H1E, and opportunities like these can make a world of difference to him and his family.
“He is a funny little boy with a cheeky smile and a get up and go attitude,” Klimenko said.
“It was wonderful to see his face light up and his infectious laugh in the garage.”
Klimenko met the family at Rare Star Day hosted by the Steve Waugh Foundation on March 11 earlier this year.
“I was sitting at their table and they were from Tasmania so one thing led to another.”
“Having kids myself, it’s a real eye opener to see first-hand the amazing work the Foundation does to help children in need.”
The Foundation has provided Xavier with a safe outdoor area he could independently play, as well as offering support and the opportunity to connect with others.
“The Foundation was a god send for us, we were getting rejection after rejection from different funding bodies,” Xavier’s father, Jeffrey Kitchin said.
“It (the play area) has been a huge asset to helping grow Xavier’s independence and providing him with a safe area to play.”
Kitchin also admitted that without knowing what Xavier’s future holds, they make the most of their moments together.
“With not knowing what the future holds for Xavier, these opportunities enable us to make the now as special as we can and make life long memories,” he said.
“His face just lit up with excitement as soon as he could hear the cars.
“It’s an experience we could possibly not do normally without Betty’s offer and by giving us this opportunity it makes us as parents feel fulfilled to see our children excited and happy.
Xavier isn’t the only one benefiting from the Steve Waugh Foundation, with thousands of rare disease patients across Australia.
It’s common misconception that rare diseases are uncommon, with about 8000 rare disease affecting an estimated 1.5 million Australians, including about 300,000 Australian children.