Trichothiodystrophy, or TTD, is something many people have never heard of, but Craigieburn’s Sammy Joe Liistro, 25, has to battle this rare genetic disorder every day.
Mr Liistro is allergic to UV light – sun – and has to “live by the night”. He was diagnosed at age 13, but his family knows they were late finding out what was happening to him.
“The doctors didn’t pick it out; they didn’t know what was wrong with him,” his father, Joe Liistro, says. “We took him to a specialist who first diagnosed him with lactose intolerance and sent a hair sample to America. It took about a year, but they diagnosed Sammy Joe with TTD.”
On July 27, Joe will take to an inner- Melbourne track for the annual Run Melbourne multi-charity fund-raiser, in his case raising awareness and funds for the charity he co-founded with his wife Maria in 2006 – The Friends of Sammy Joe.
“He saw other parents doing things and he wanted to do something extra,” Maria Liistro says. “He wanted to put his stamp on the Run Melbourne event and let everyone know of the small charity we have.”
The couple have dedicated their lives to helping Sammy Joe live with his condition and they say it has only made the family stronger.
So far, the Friends of Sammy Joe has raised $100,000 and helped lower the disorder’s diagnosis age. “We’ve changed the face of TTD in Australia and now, at least, parents have somewhere to go and feel like they belong to a large family of the 198 families who have children with [it],” Mrs Liistro says.
To donate or to learn more, visit friendsofsammyjoe.org or “like” facebook.com/marialiistro1711.
For Run Melbourne information, visit runmelbourne.com.au
