The Schmid Family

It took until Hugo was two years old, for the family to learn the boys have Usher Syndrome Type 2c.

Julianne and Peter have three boys: Will (6), Hugo (4) and Callan (2). Both Will and Hugo were diagnosed with deafness through the newborn hearing screening program, but it took until Hugo was two years old, for the family to learn the boys have Usher Syndrome Type 2c. Julianne and Peter found the diagnostic process to be a really challenging time, with professionals not always explaining complex medical terminology in the best way. The rareness of the syndrome also meant that medical professionals struggled to provide the family with useful information and support.

“We were teaching our specialists as much as they were teaching us.”

However, both Julianne and Peter agree that a lot of positives came from the diagnosis. Once they knew the boys had Usher Syndrome they were able to look for specific supports and found UsherKids Australia. It also meant they could access NDIS funding to begin specific therapies to help Will and Hugo. This has allowed them to begin preparing for vision loss whilst the boys still have their sight.

“They’re typical kids, they just don’t have typical hearing and one day they won’t have typical sight.”

Will is now at school and Hugo is about to begin a year of pre-prep for hearing impaired kids. They have found that day cares and schools who have experience with kids who have disabilities have been fantastic at meeting Will and Hugo’s needs.

It has also exposed the boys to kids with other disabilities who are achieving fantastic things. Julianne and Peter are now focusing on providing Will and Hugo age-appropriate information about Usher Syndrome as they get older.

“They can do just about anything they want to do. There shouldn’t be too many restrictions for them. There’s always a way around something, that if they want to do something, I’m sure that they can, there’s a way of doing it.”

Lara Miller

Lara Miller

Lara Miller Suffers Usher syndrome (type 2), a condition that has caused her sight and hearing to deteriorate, year after year, since she was a teenager.Like something of a modern-day Monet, Australia’s Lara Miller is capturing the world as it disappears before her...

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Daniel Talko

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Daniel Talko Daniel grew up in a small Victorian town of Bairnsdale. At the age of 21 he was diagnosed with Usher Syndrome Type 2a.  Forced to choose between waiting for blindness, deafness and disability or a life well lived Daniel took off around the world to find...

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The Sandles Family

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The Sandles Family Maggie was diagnosed with deafness at eight months of age, after many months of her mother, Bronwyn, telling medical professionals that she believed Maggie was deaf.Maggie is eighteen years old and finished high school in 2020. She loves sport and...

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The Feller Family

The Feller Family

The Feller Family Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program.Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program. As...

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The Doak Family

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The Doak Family Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants.Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants. However, Bronwyn believed there was more going on, as Eamon...

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The Cox Family

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The Cox Family Vicki received confirmation that her daughter, India, had profound hearing loss when she was fifteen months old, the day before the birth of their second daughter Samira.Vicki received confirmation that her daughter, India, had profound hearing loss...

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