Lorelei’s story

05 Feb 2019

Nine-year-old Lorelei and her dad, Peter, have a lot in common.

 

Not just because they share the same interests and sense of humour. But they also share the same rare kidney disease and have been cared for by the same nurse.

Lorelei and her dad were both diagnosed during childhood and live with a condition known as Focal Segmental Glomerulosclerosis (FSGS). The condition attacks the kidney; severely damaging the unit needed to filter blood, and often leads to life-threatening kidney failure.

Lorelei’s journey with FSGS has been very similar to her dad’s. Her kidneys failed soon after she was diagnosed in November last year and she was immediately placed on dialysis. Recently, she also received a lifesaving transplant, just like her dad.

Jill Farquhar, Nurse Practitioner in Nephrology at The Children’s Hospital at Westmead, cared for six-year-old Peter in 1982, when he was diagnosed, and now also looks after Lorelei.

“It’s hard seeing Lorelei going through this but I look at what happened to me 35 years ago and the amazing care I received and I know that things are going to be so much better for her, thanks to people like Jill and all the other advancements in science, equipment and research,” Peter said.

“It’s a weight off my mind knowing Jill is looking after her because I know how great she was back when I was a kid.”

When Peter was diagnosed with FSGS in 1982, there was very little known about the condition. It didn’t even have a name. And still, up until recently, there was no known cause. It has only been in the last year that Lorelei and her family received the news that the condition was genetic.

While it has been difficult for Peter to accept that he passed the faulty gene on to his little girl, he has become her role model.

  “There aren’t many people that can relate with what Lorelei’s going through. She needs someone that she can confide in and talk to and ask questions - questions that a lot of people wouldn't be able to answer and that’s something that I can give to her,” Peter said. One piece of advice Peter has given to Lorelei is, ‘don't let this disease own you, you own this disease’ – advice that Lorelei has well and truly taken to heart.

Lorelei’s journey will be life-long with her condition requiring ongoing treatment, but with the help of her team at the Hospital and support from her family, her future is looking optimistic, just like her dad’s.

“We are so grateful for the care our family has received from the Hospital. To have children enter the doors as sick as I was, and as sick as Lorelei was, and walk out thriving, I think it’s amazing.”

This year, Lorelei and her dad are ambassadors for the 30th anniversary Bandaged Bear Appeal, which over the years has helped raise vital funds to save generations of families just like theirs.

Millions raised. Generations saved. Donate and help sick kids like Lorelei today.