A very special Feller

FIVE-YEAR-OLD Harry Feller loves trains. He collects footy cards, too, and barracks keenly for the Hawks. For the most part, this lively young lad fits the bill of your average preschooler.

But Harry was born with Usher Syndrome, a rare genetic condition which means he has been deaf since birth, encounters trouble with his balance, and, tragically, will likely begin to lose his eyesight before adolescence.

Notably, although Usher Syndrome comes in many different types, the version that Harry has – Type 1F – is caused by PCDH15, a gene associated with Ashkenazi Jews. Experts believe only around 5000 people in the world have Usher Syndrome Type 1F, and Harry is the only one currently known in Australia.

“Harry’s story is about the fact that it is specifically a Jewish gene that has affected his outcome in life,” mum Hollie told The AJN.

“There are probably undiagnosed families out there. There must be. Statistically he can’t be the only kid in Australia with Usher 1F.”

Dad Daniel noted while they are seeking to raise awareness about Usher Syndrome in the wider community, additionally they want to reach the Jewish community specifically. “We don’t want any Jewish child to get left behind,” he said.

With Harry able to hear as a result of cochlear implants – a “modern miracle” according to Daniel – and the issue of balance being constantly worked on, far and away the biggest worry for his family is Harry’s endangered eyesight.

Unsurprisingly, they are unwilling to sit back and wait for their son to lose his vision. Since finding out for sure Harry had the condition in early 2014, they have been doing everything in their power to see a cure is found before Harry becomes blind.

This has included attending global conferences, speaking to world-leading specialists, and knocking on doors of research institutions.

“Currently there isn’t any significant research leading to trials in Australia, but we are hoping to change that,” said Hollie.

This year Hollie, together with the Melbourne mother of a non-Jewish boy who has Usher Syndrome 1B, established UsherKids Australia to provide support for families in a similar situation.

Among their goals is to see children diagnosed earlier, so families can avoid the anguish of a “double diagnosis” – first finding out their child is deaf, and then that they have Usher Syndrome years later.

“We’re really working with clinicians and other allied health workers to understand what Usher Syndrome is so they can help pick it up earlier and support families going for a genetic diagnosis a lot earlier,” Hollie said.

This has been a significant month for Usher Syndrome Awareness. The Usher Coalition in America established a campaign leading up to Usher Awareness Day last Saturday.

Tasked to document 26 days of awareness (the campaign coincided with the equinox), the Fellers chose to share their journey as a train journey, photographing Harry at a different train station each day with a sign promoting Usher Syndrome.

The campaign gained a great deal of traction on social media, with friends and relatives near and far posing at their local stations to raise awareness, and even a handful of celebrity endorsements.

The Fellers are optimistic that a treatment will come through in time for Harry.

“Whoever it is that cures this syndrome that affects hardly anyone in the world, they will be able to use that method to transfer it to other forms of eye disease and cure hundreds and hundreds of thousands of people. Millions of people. So [Harry] will just be the first. We’ve got no problem with that.”

For more information visit www.usherkidsaustralia.com or email Daniel Feller at daniel@talismanlicensing.com.

PHOEBE ROTH