Help brave little Lilly live with hearing loss

Lilliana Robertson with her parents Matia and Dale and eight-day-old sister Adelina.
Lilliana Robertson with her parents Matia and Dale and eight-day-old sister Adelina. Sarah Harvey

ONE-YEAR-OLD Lilliana Robertson loves butterflies - not just for their beauty, but because they share the same condition.

Like butterflies, Lilly was born deaf.

Upon meeting the bubbly Coominya tot, you wouldn't know she suffers partial hearing loss.

Yet two in every 1000 children are born with hearing complications in Australia each year, according to the Hear and Say foundation, which has launched the Butterfly Appeal to raise money for deaf kids.

Lilly's parents Matia and Dale Robertson, were told their first child was profoundly deaf after she was born eight weeks premature, weighing just 950 grams.

After a series of tests doctors diagnosed Lilly with auditory neuropathy spectrum disorder (ANSD) - a condition affecting the transmission of sound from the inner ear to the brain.

"She can hear soft sounds, but we just don't know how clearly," Mrs Robertson said.

"They can't figure that out until she starts talking some more."

While premature babies are more at risk of developing ANSD, the cause behind Lilly's diagnosis remains unknown.

"In the beginning she was diagnosed profoundly deaf," Mr Robertson said.

"It was devastating, but we decided if that's what it is then that is what we will deal with.

"She had a high bilirubin count and had to have a blood transfusion at five days old so it could have been from that.

"She may need a cochlear implant depending on how her speech goes. But the doctors said they'd never had a baby with the turnaround she has had."

Lilly must attend auditory verbal therapy each fortnight through Hear and Say, a Queensland charity which helps children with hearing impairments to speak.

It costs $10,000 per child per year to undergo the therapy.

The Robertsons said they would be lost without the help they received from Hear and Say and were urging people to donate to the Butterfly Appeal.

Hear and Say chief executive Chris McCarthy said the charity must raise more than $4 million this year, through community and corporate support, so that no deaf child needs to live in silence.

You can buy merchandise in March from KFC or online at www.butterflyappeal.com.

 

Hearing loss

  • 2.5 in 1000 children are born with hearing loss.
  • Two in every 1000 children develop hearing loss by age five.
  • Hearing impairment is the most common disability in children.

Topics:  charity, children, deaf awareness, health, hear and say foundation, lifestyle



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