Why Burleigh Waters kid Kobi McDonald’s ninth birthday is a blessing and a curse
A child’s ninth birthday should be playful, pleasant and carefree — but for Kobi McDonald’s family it’s a double-edged milestone.
Lifestyle
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A CHILD’S ninth birthday should be playful, pleasant and carefree — but for Kobi McDonald’s family it’s a double-edged milestone.
Kobi, who turns nine today, has a rare genetic blood disorder called Congenital Thrombotic Thrombocytopenic Purpura (CTTP). It’s a condition that kills 93 per cent of sufferers before they turn eight.
For Kobi to make it this far, he is a medical marvel to doctors and a miracle to his parents.
“On one hand we’re amazed we can get to where he is,” Kobi’s father Nigel McDonald said.
“We were told time and time again he wouldn’t see Christmas, Easter, next Christmas, next Easter, and so it went on. We’ve got a wonderful appreciation for what keeps him going.
“But then we know we’re probably gearing up to the pointy end, the not so nice stuff. On one hand it’s (his birthday is) fantastic, but there’s a lot of anxiety, I guess, surrounding the birthday.”
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There is no known cure for CTTP which is genetic and caused by a mutation in a specific gene that affects specific proteins in blood.
As a result Kobi has a low immune system and his blood vessels regularly shatter, which can cause dangerous clots and impact his kidney function.
Kobi’s family lives in Burleigh Waters and he attends hospital every second Tuesday for plasma infusions, however sometimes this can escalate to daily infusions and stays in hospital that go on for months.
“Although he’s quite ill internally, he still looks okay on the outside,” Mr McDonald said.
“On the outside he looks amazing and when he’s well has an absolute ball, himself and my other two kids, the three of them have got this wonderful appreciation for life.”
Mr McDonald wants Kobi’s story to highlight the need for plasma donations and giving blood.
“The (Australian Red Cross) Lifeblood thing for us is vital — if people don’t donate, he’s finished,” Mr McDonald said.
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“My aim is to fill every appointment of each of the donor centres on the Coast with donors both new and returning. We have a goal of saving more than 1200 lives this year with our Lifeblood Kobi’s Klub group.
“It’s just not our son, it’s for anyone that’s had any cancer or trauma or organ donors or transplants, women with kids and childbirth. There’s hundreds of reasons why people should be donating.”
Gold Coast Lifeblood group account manager Kristy Purnell said flu season sees a decrease in donations every year.
“Going into winter, we often see a drop in donors, however the need for blood doesn’t stop,” she said.
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“One in three Australians will need blood or blood products in their lifetime and one blood donation can save up to three lives.”
For now, Kobi is looking forward to celebrating his birthday surrounded by those who love him most.
“He’s emotional and smart, he’s eight going on 40, and wiser than half my friends,” Mr McDonald said. “He’s a tough little guy.”
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