FIVE-year-old Harry Feller was born profoundly deaf. He was born with the rare Usher syndrome and other inherited genetic diseases, and before he knows it, unless a cure is found, Harry will be blind before he hits adolescence.
In a race against time, Harry’s father Daniel is doing everything in his power to find that cure for his son. This time he is partaking in a -two-day 250km bike ride starting next weekend – the GCA Cycle Around the Bay – around Melbourne’s Port Phillip Bay to raise funds for Genetic Cures Australia (GCA).
“When we had Harry’s diagnosis in March 2014, there was little happening to speak of in terms of finding a cure for Usher’s syndrome,” Daniel said.
“Today we have at least five centres of research working on this globally …
“We need to keep the momentum going – there’s no time to waste when it comes to saving Harry’s sight.”
The bike ride will comprise 20 “fellas”, beginning in Elsternwick next Saturday (March 25) before returning from Sorrento the following day (Sunday, March 26).
Since their son’s diagnosis, Harry’s parents Daniel and Hollie have been working tirelessly with Associate Professors Alex Hewitt and Alice Pebay to launch and found GCA.
The aim of the foundation is to fund research into inherited genetics diseases, much like Usher syndrome, to find cures for sufferers like Harry, and to establish Australia’s reputation as a leader in gene-based therapies worldwide.
Hewitt said the medicine world is on the brink of an enormous change.
“The world of medicine is on the cusp of changing dramatically due to genetic science, genome editing and stem cell research,” Hewitt said.
“All that stands between a cure for kids like Harry is time and resources to develop techniques which will safely and effectively deliver treatment.
“Funds raised through Cycle Around the Bay will allow us to expand this work.”
As The AJN reported late last year, 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.
As the Fellers continue their race against the clock, the much-needed funds for Harry and GCA will go a long way to helping. As Daniel Feller says, “There’s no time waste.”