When Tamara and DJ Hughes discovered that their son Hunter had a hearing disorder, they could have been excused for feeling they were down on their luck.
When seven years later, daughter Harlym was diagnosed with the very same disorder, anyone would be excused for thinking it was genetic.
Two children so far apart in the same family has doctors baffled. Neither parent has hearing problems, and neither side of the family has a history of hearing problems.
The disorder, enlarged vestibular aqueduct (EVA) syndrome, is in itself not overly rare. It effectively sees a gradual decline in hearing after a child is born, until they become deaf.
Hunter has a cochlear implant in his right ear, which he got after numerous trips to the doctor and an MRI when he was 2-years-old.
“Nothing prepares you for this, and nothing prepares you for the second one,” Ms Hughes said.
“But for us, this is part of their personality. It makes them who they are. I just couldn’t think of my children any other way now.
“Yes, there are things we now need to be conscious of. Little thinks like ensuring Hunter’s ‘ear’ doesn’t go into the shower or situations when there might be static electricity. But when it comes to communication, we’re grateful for the help we’ve been given.”
Both Tamara and DJ have learned to sign, but Hunter is quick to tell them when they get it wrong.
“I like to sign and my friends are learning to sign too,” Hunter said. “But it’s also great being able to speak.”
Hunter, who attends Park Ridge State School and has an educational interpreter four days a week, says it’s great being able to turn his “ear” off when mum or dad nag too much, or when Harlym cries too much.
Harlym will also require cochlear treatment, which along with spoken language therapy, should see her progress like any other child with full hearing capacity.
But such technology doesn’t come cheap.
The Hear and Say Centre, which provides cochlear treatment, runs as a not-for-profit and has gifted hundreds of children the ability to hear.
Each treatment process costs about $10,000 per year for up to six years.
On October 23, Hear and Say is promoting its 14th Loud Shirt Day to raise awareness of hearing loss which impacts about one in six Australians.
The Hughes family is encouraging everyone to rock their loudest attire on the day in their workplace, school o community group, and to dig deep with donations big or small.
To donate: www.hearandsay.com.au/loudshirtday
