Jude's fight with a disease so rare he's one of 72 in the world

When he was 14-months-old, Jude was diagnosed with IRAK-4 deficiency, a genetic autoimmune disease.

It's a disease so rare that Jude is one of just 75 people in the world who have been diagnosed, and one of two people in Australia.

IRAK-4 deficiency means Jude is prone to life-threatening bacterial diseases, and is kept alive by daily antibiotics and weekly immunoglobulin infusions, which come from donated plasma.

Recently, Jude completed his 200^th immunoglobulin therapy, which is a huge achievement for someone so young.

Jude's mum Olivia is sharing her son's story for Rare Disease Day on Thursday, February 29, the rarest of all days, to raise awareness for all rare diseases.

"Jude started getting sick at 10-months-old, we didn't know he had a disease and it just kept getting worse and worse, and more [hospital] admissions until one night he was air-lifted from Maitland Hospital to the John Hunter Hospital into PICU, which is the ICU for paediatrics," she said.

His blood samples were sent off to America and a few weeks later the Murdochs were told about Jude's diagnosis.

Jude spent the first few years of his life in and out of hospital so much that one day, while parking at the hospital Jude asked his mum if they were home. "That was probably one of the hardest things I've ever heard," Olivia said.

While medicated, Jude is going well. "Jude relies heavily on antibiotics, so he will take two types of antibiotics twice a day, which actually keeps him alive," Olivia said.

"He also has blood plasma (immunoglobulin) from the Red Cross, so when people go and donate their blood and their blood plasma, they should know that it's helping a little boy stay alive.

"You can look at my son and think wow, he looks amazing, he doesn't look like a sick little boy, but that's because he's very heavily medicated."

This year, Jude began kindergarten, which is a huge deal for his family, who weren't sure if he would be able to attend normal school or even live to be old enough to go.

"This was huge for us, we couldn't believe it. Our son is alive and well, he's just gone to preschool and now he's going to actual school," Olivia said.

The Immune Deficiencies Foundation Australia (IDFA) is using Rare Disease Day to educate communities about Australians living with immunodeficiencies.

For more information visit www.idfa.org.au/rare-disease-day.