Meet three of the inspiring teams raising funds for PCHF.
Perth’s biggest fitness fundraising challenge – the HBF Run for a Reason – is back on Sunday, 21 May. Thanks to the amazing runners heading out on the course to support the Foundation. Ahead of race day, we caught up with three of the incredible teams pounding the pavement to funds raise for PCHF.
In the days following her birth, Addison was diagnosed with septo-optic dysplasia, an early brain development disorder.
With her parents Kara and Brent, and her older siblings, Ruby (13), Maison (11), and Kendall (5) by her side, Addi spent the first few weeks of her life in Intensive Care. During the year that followed, she would be admitted to PCH more than 15 times.
Around 30 per cent of people diagnosed with septo-optic dysplasia have all three features of the condition: underdeveloped optic nerves, pituitary gland dysfunction and brain abnormalities. Devastatingly, Addi was affected by all three.
“We’ve lost count of the number of weeks Addi has spent at PCH, and if she isn’t in hospital, she’s with specialists taking part in various therapies. It’s heartbreaking to think that this will be Addison’s reality until she’s 18 years old,” – Katelyn, Addison’s aunt.
In addition, Addison is also considered legally blind. However, her determination is remarkable. Thanks in part to the hard work and dedicated of the teams at PCH, she continues to meet her milestones, making her aunty, uncle, and parents incredibly proud.
For aunt Katelyn, Addison isn’t her only reason for running. Her own son, Cooper, has also attended almost 50 outpatient appointments at PCH due to chronic respiratory issues he’s had since birth.
“The amount of support we have received is remarkable. We feel so grateful to have doctors and healthcare professionals who really do care for our children,” Katelyn said.
At just 18 months old, Caitlin spilt the contents of a boiling kettle on herself whilst on holiday in Phuket. She was flown back to Perth, undergoing treatment in the Princess Margaret Hospital (PMH) burns unit.
Thankfully, the care Caitlin received meant that her extensive burns didn’t result in scarring. This year, she’ll be running her first ever half marathon in the HBF Run for a Reason.
Caitlin said: “Every year 150 Aussie kids lose their life, and 68,000 are hospitalised due to accidental injuries. I was incredibly lucky but that is not always the case.
“Having spent time in PMH for burns as a toddler, and now on the other side as medical student, it’s a cause dear to my heart, which is why I chose to raise funds for PCHF.”
Caitlin, now 24 is studying medicine, and has even spent time at PCH on student placement. “It’s a great hospital, and the facilities are top notch. I’d be keen to come back at some stage in the future, hopefully during my intern year,” she said.
Noni Roh - Running for Rare Care.
For many years, we didn’t have a diagnosis for Sophie’s syndrome, just a long list of conditions that all needed attention.
Aged just 18 months apart, my sister Sophie and I have always been very close. One of my earliest memories was helping to bath her, feed her, brush her hair, and pick out bright clothes to wear after she’d been through one of her most extensive surgeries.
At the time, there wasn’t widespread public awareness or cross-sector service support for people with rare or undiagnosed conditions. As a family, we struggled with a lack of knowledge, support, and limited communication between services.
When Sophie was finally diagnosed, mum and dad were relieved to finally have an answer – Desbuquois Syndrome. Having a diagnosis and direction of care meant less time away for medical appointments, and more time at home as a family.
As the older sister of someone living with a rare condition, I was so appreciative to hear about the new Rare Care Centre at PCH. Rare Care – the Clinical Centre of Expertise for Rare and Undiagnosed Diseases, aims to streamline care, improve knowledge and to promote awareness and understanding within the health space and community at large. This kind of support will give families precious time back to spend together.
Help support the Rare Care Centre, donate here.