Tracey Speed works at the Public Transport Authority of WA. As PTA charity champion for May, Tracey hosted activities to raise awareness of FX with the PTA staff and contributed this story to the staff newsletter about her son, Nathan...
“In Australia, one child a week is born with Fragile X Syndrome, but few people know the disorder exists.
N&I contract support officer Tracey Speed is one of those few, and is on a mission to raise awareness of the genetic condition, and its lack of formal funding.
Tracey’s son Nathan Dighton-Speed, 30, is cheeky and funny, works two days a week and loves ten-pin bowling, fishing on the family boat and the Carlton Football Club.
Nathan also has Fragile X Syndrome – a condition similar to (and often mistaken for) autism – which occurs when the X-chromosome is fractured.
“We first realised something was happening when Nathan was around two-and-a-half,” Tracey said.
“While he walked very quickly, his speech was delayed, and it became clear that his understanding and comprehension wasn’t where it should be.”
However, it was not until he was seven that he was formally diagnosed.
“Fragile X Syndrome is quite rare, and it’s also not funded by anyone – organisations like the Fragile X Syndrome Association are entirely self-funded,” she said.
Tracey, who is one of the PTA’s charity champions, will be raising money to support the association during May. It provides specialised assessment clinics, information, support, counselling and workshops for people with Fragile X and their families.
“It’s up to you how you raise children with Fragile X, but we set out to raise Nathan exactly the same as my step-daughter,” she said.
“Nathan has such a cheeky sense of humour, he’s very quick-witted, and he has the biggest heart you could possibly imagine.
“Nathan has taught me tolerance, patience – which isn’t one of my strong traits – and I’ve learned how to actually listen too.”
Tracey also urged all PTA staff to consider how they reacted to people who were a bit different, both in their work and private lives.
“Nathan, like many people with related disorders, gets a bit of a tic when he gets excited – he gets a few strange looks on buses and trains,” she said.
“I would say, when you see or meet someone like Nathan, don’t judge them, accept them for who they are and what they are, deep down they are just like you and me.”
PTA staff: To donate to the Fragile X Syndrome Association, visit fragilex.org.au or email email@example.com “