The Alderman Family

Shelley and Will found ou that their son, Noah, had moderate to severe hearing loss through the universal newborn screening program.

Shelley and Will found out that their son, Noah, had moderate to severe hearing loss through the universal newborn screening program. They describe the first year or so of Noah’s life as being quite full on, as they learned to naviate the medical system, attended different appointments and tried to find answers. When Noah was two, and with Shelley pregnant with their second child, the family was told Noah has Usher Syndrome, Type 2A.

In the year after receiving the diagnosis, Shelley and Will used social media and UsherKids Australia to find others with Usher syndrome who are thriving and doing well in life. They both found this to be very beneficial to them, finding comfort in seeing others who have lived through what they are currently going through.

“So now that we know, it is much easier for me to navigate. There’s less questions, there’s less questioning.”

Shelley and Will are now looking towards Noah’s future. They think it will be important for Noah to understand what the future may hold for him and they plan to discuss Usher syndrome with him when he is able to understand. They hope to involve him in the Deaf community, so Noah can be around other kids who may face similar experiences to him.

“We want Noah to be proud of who he is, and that he’s doing an amazing job… but he does have challenges.”

Shelley and Will’s team recommended against going down the rabbit hole of googling everything to do with Usher syndrome, and they encourage other parents to do the same and stick to official websites.

They also suggest that parents build a team of professionals that they trust and can rely on, as their support is incredibly important. For friends and family of those with Usher syndrome, Shelley and Will recommend being a listening ear that parents can go to without judgment.

“Our eyes have been opened to all the things people with disabilities can achieve and the world of opportunities that are still available.”​

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 Schmid Family

The Schmid Family

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...

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The Sandles Family

The Sandles Family

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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