22 August 2018 In the community

Kaia’s Story

Kaia’s Story

Kaia, of Southport, was diagnosed with focal segmental glomerulosclerosis (FSGS) at the age of three. FSGS a rare disease which causes scar tissue to develop in the kidneys preventing them from filtering waste out of the blood.

Initially, doctors were able to stabilise the condition with medication, but in early 2014, Kaia had to be placed on dialysis for two months and her family were told she would need a kidney transplant.  Fortunately, her dad, Ryan, was a match for Kaia and was able to donate a kidney to her the following month.

The transplant was successful and Kaia started to experience life again as a healthy, happy kid – and even started playing state netball.

However, in December 2017, Kaia noticed some swelling in her hands. She put it down to simply being a little unwell, but during a routine check-up at Lady Cilento Children’s Hospital in Brisbane in January 2018, doctors discovered that the FSGS had recurred in her new kidney, and she was re-admitted to hospital.

Kaia, now 13, is currently undergoing plasma exchange treatment using an apheresis machine, purchased by the Children’s Hospital Foundation, three times a week in a bid to improve her kidney function.

Plasma exchange involves the removal of a patient’s own plasma and replacing it with donated plasma from the Australian Red Cross Blood Service.

In Kaia’s case, the plasma exchange treatment ensures her own antibodies are eliminated so they do not attack her transplanted kidney. The treatment has proven to be beneficial to date, and she will continue to receive the plasma exchange for at least the next three months.

Despite her FSGS challenges, Kaia has remained an upbeat, driven, Beyoncé-loving teenager, who hopes to one day become a nurse herself.

“I’d tell any other kids who are going through a similar situation to me to just be positive. It’s the only way to get through it. Also, there’s always other kids worse off…,” Kaia said.

Clinicians at the Lady Cilento Children’s Hospital have performed more than 200 therapeutic plasma exchange procedures in the past four years. A second machine, funded by the Children’s Hospital Foundation, was needed when demand for the treatment doubled in just 18 months.  The machine is also used for neurological and rheumatological conditions.

To help the Children’s Hospital Foundation continue to fund state-of-the-art life-saving medical equipment at the Lady Cilento Children’s Hospital, and help chronically ill kids like Kaia, please donate here.

Kaia is pictured here with Joanne Jones – CNC, Nephrology.