Yiana is 18-years-old and has one simple wish, to be a regular teenager. After being diagnosed with autosomal recessive polycystic kidney disease at just six weeks of age, doctors gave Yiana little chance of survival. Today, after one transplant, multiple biopsies and hospital stays, and years spent on dialysis, she is now in end stage kidney failure for the second time in her life.

After a difficult first year of life, Yiana was finally starting to do well, but not long after her first birthday she developed a urine infection. This type of infection is common for those with kidney disease, but this time it led to a further, more severe, staph infection and within three days Yiana was placed on life support in Rosella (Paediatric Intensive Care Unit) at The Royal Children’s Hospital (RCH).

Yiana’s mum Elizabeth said it was a terrifying time for the family, but thankfully Yiana was able to pull though and after three weeks in intensive care and a further two weeks on the ward she could return home.

“After the infection Yiana recovered slowly but it was back to the beginning for us. She had to start being fed through a nasogastric tube again and it felt like we were back to square one,” said Elizabeth.

In the years following Yiana had monthly visits to the RCH and more biopsies as well as having to deal with liver and spleen complications and asthma.

“Yiana’s immunity was so low so she was getting sick all the time,” she said.

The complications meant that a just five years of age Yiana had to undergo a nephrectomy, meaning surgeons removed one of her kidneys. And just two years later, her other kidney stopped working and she went into end stage kidney failure.

“Yiana was on dialysis for 10 hours every night, and that went on for two and half years. As a mother, it’s really difficult to see your child go through all of this, it was just so hard,” said Elizabeth.

Two years into dialysis, Yiana was placed on the kidney transplant wait list, and went on to receive a new kidney at 10-years-old.

“It was such a blessing. Our girl could finally ride her bike and do simple everyday things like have a shower. It was liberating for her and for the whole family, she had her life back,” she said.

However, unfortunately the blessing of a normal life only lasted eight years for Yiana. Amazingly, she managed to complete her VCE and graduate high school but she is now, once again, in end stage kidney failure and is back on dialysis. This time Yiana is on haemodialysis, which is administered three to four times a week at the RCH and means she is spending most of her time in hospital. And once again the family are waiting, for another new kidney.

“Her life is on hold again. It’s exhausting and frustrating. She hardly ever complains but I know how hard it is for her. It’s the normal things she’s missing out on. Her friends are out having a great time and enjoying being a teenager and she’s spending most of her time in hospital on haemodialysis and taking up to 28 medications a day, every day,” said Elizabeth.

Yiana loves to cook, but for now her hopes and dreams to study and work are on hold.

“A transplant could be a long way off so I don’t want to get my hopes up and it makes planning for the future hard. I just take on day at a time. Mostly, I miss just doing the usual things with my friends. I’m always in the hospital and always tired and have no energy; it just makes me feel detached from any sort of normal life. And I really miss just being able to have a shower and wash my hair,” said Yiana.

Elizabeth says the disease is like a prison sentence for Yiana.

“I try to instill perspective in both my children to remember that there are others out there going through a harder time, but sometimes Yiana’s going through so much it makes it difficult,” she said.

“Organ donation is such a precious gift; it’s the gift of life and the most important thing you could ever give to someone.”

Yiana says she would just love the chance to have her life back, to be able to move forward and pursue her dreams.

“Most people don’t realise just how much of a difference organ donation would make to someone’s life, you’re giving them a second chance,” she said.

For more information on World Kidney Day head to http://www.worldkidneyday.org/

To find out more about organ and tissue donation and to register as a donor, head to http://www.donatelife.gov.au/