Kobi McDonald: Gold Coast family’s plight to save his life
Kobi McDonald is like any other Gold Coast eight-year-old. But to his doctors, he is a medical marvel. Why? Because science says he shouldn’t be alive.
Lifestyle
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KOBI McDonald is like any other Gold Coast eight-year-old. He loves swimming, playing with his brothers and sisters and gets embarrassed when his Mum kisses him on the cheek.
But to his doctors, he is a medical marvel.
Science says the Burleigh boy shouldn’t be alive.
Kobi has a rare genetic blood disorder, Congenital Thrombotic Thrombocytopenic Purpura (CTTP), a condition that kills 93 per cent of sufferers before they turn eight.
Only seven people in Australia have Congenital TTP, and 400 worldwide.
The genetic condition is caused by a mutation in a specific gene that affects specific proteins in his blood.
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The Caningeraba State School student is the middle child of five. None of the others has
been diagnosed with the disease.
There is no known cure to prevent his low immunity and the regular shattering of his blood vessels, which can cause dangerous clots and impact his kidney function. He is kept alive through regular plasma infusions.
Using three full bags of plasma every infusion, the rates of his treatment fluctuate, dependent on his health.
At times, he needs daily doses and is in a hospital bed for months on end.
“It’s a Band-aid,” Kobi’s mother Rebecca McDonald said. “But it is all we have at the moment.
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“We are always on edge. We go from good times when we work and save money to when he is in hospital and we do what we need to.
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“It is hospitalisation their whole life. There is no cure. Plasma is the only way we are going to keep him alive.
“Every day we all wake up together as a family is a good day.”
Kobi’s dad Nigel has tried in vain to personally replace every bag of plasma used by his son.
“I remember when Rebecca phoned me about Kobi. He was nine months old and was found bleeding from the nose. When they took him to hospital they told us we were lucky he hadn’t bled out.
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“Since then it has been a whirlwind of misdiagnoses until we found the right haematologist who diagnosed him and we got treatment.”
As Kobi’s symptoms have worsened, the family has called on others to donate blood and plasma. Every time Kobi has an infusion, his dad donates plasma to ease what he calls guilt.
The McDonalds have established Kobi’s Klub, in which each plasma donation supplied is recorded in Kobi’s name.
For the past four years their goal has been to save 500 lives a year. They are yet to get there.
This year Kobi, who checks the record regularly, hopes to finally reach the target. They are on 312.
Mr McDonald has a simple message for anyone touched by the family’s plight: “We work, we are able bodied, we can cook for ourselves. The greatest thing to help us is to donate (blood and plasma) and scream to the world that it is needed.
“There have been lots of sleepless nights, lots of tears. To us, this is an easy thing people can do to help. It is literally liquid gold.”
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