Bunbury mum says CF research fundraiser grants hope for son
Taryn Barrett’s son Connor has faced many challenges since he was diagnosed with cystic fibrosis (CF) at three weeks of age but she is hopeful he has a brighter future ahead.
The Bunbury mother of three will share her family’s story at the Glenn Brown Memorial Fund Melbourne Cup fundraiser as one of the keynote speakers to be held at Fraser’s Restaurant on Tuesday, 1 November.
Taryn has been working with other families across Western Australia to raise funds for life-saving research and lobby for modulator medicines to be added to the PBS since Connor was born seven years ago.
Taryn said Connor was diagnosed through the Guthrie heel prick test and immediately began his regimen of twice-daily chest physiotherapy and consumption of more than 175 doses of medicine weekly.
“Connor is one of 3,500 precious Australians fighting against this devastating disease and time isn’t on their side,” she said.
“The CF researchers, like those at the Institute for Respiratory Health, hold my little boy’s life in their hands and they need our support.
“Parents of children with CF celebrate their child’s birthdays and milestones happily but they simultaneously frighten us because we know that every day, month and year matters.
“While we welcome the research breakthroughs that we’ve been granted in recent years, the tragic reality is that only half of adults with CF are making it to their 30s.
“I want Connor to expect that he will grow old alongside his brothers and I am forever grateful for the researchers at the Institute for Respiratory health who work tirelessly to make this a possibility.”
The Glenn Brown Memorial Fund Melbourne Cup fundraiser was started by mums Janeine Thomas and Alison Guest in memory of Glenn Brown, a young boy from Kalgoorlie, who sadly died from CF when he was just 15 years old.
“This incredible fundraiser has raised more than half a million dollars since it started in 2003,” Taryn said.
“It’s a memorable event and I love that it honours the memory of such a beautiful boy while giving hope to those with CF who have come after him, like our Connor.
“Glenn was worried that he’d be forgotten but he continues to inspire through this event.
“I’m honoured to be invited to speak at the event and to share our story so far and our greatest hopes for the future. I’m also grateful to Janeine and Alison and the Institute who have been supporting research into cystic fibrosis for decades.”
Taryn will be joined by keynote speaker, Maggie Harrigan, who received funding from the Glenn Brown Memorial Fund to study how adults affected by cystic fibrosis view and value themselves as a person, to help improve their overall wellbeing.
CF is a rare recessive genetic disease for which there is currently no cure.
There are still a few tickets left to this life-changing fundraiser, reserve your spot here – melbournecupperth.com.au
Photo – Taryn with her son Connor.