Angus Bond, who has Diamond-Blackfan anaemia, to notch up his 100th blood transfusion
WHEN Angus Bond tells people his name, he smiles and says: “I’m Angus Captain Courageous Bond”.
The six-year-old has Diamond-Blackfan anaemia — a rare bone marrow disease — and has been having monthly blood transfusions since he was a baby to survive.
Next year, the Aldgate youngster will notch up a century of a different kind — his 100th blood transfusion.
Angus’ mum Jess, who started the Captain Courageous Foundation with husband Jeff in 2010 to raise money to research a cure for rare bone marrow diseases, says her little boy is the family superhero.
“He is such a good little boy and hardly complains about what he has to go through every day,” Mrs Bond said.
“He loves wearing his Superman T-shirt. He certainly believes that he is Captain Courageous.”
Diamond-Blackfan anaemia is characterised by the failure of the body’s bone marrow to produce the red blood cells that carry oxygen to organs and tissue.
There are only about 1000 known cases of the condition worldwide and sufferers face a life expectancy of about 40 years.
Angus may never produce mature red blood cells and will require regular transfusions.
Because the transfusions cause iron to build up, he also needs drugs to force it out of his body.
For 12 hours a night, six nights a week, Angus has an iron-expelling drug pumped into his body.
Mrs Bond says her youngest child, after Ted, 9, and Molly, 11, is an inspiration.
“He’s our brave little soldier and he’s the one that pushes us and the foundation to find a cure,” she said.
“We might not be able to find a cure in time for Angus but to know that the foundation has the chance to change people’s lives is why we do it.
“I feel we are so close to really making a difference.”
November is the foundation’s Month of Courage.
It aims to raise more than $300,000 for the search for a cure for children’s rare bone marrow diseases.
On Saturday night, the foundation will host its Captain Courageous Gala Ball for 750 people at Adelaide Oval.
Mr Bond says support for the gala ball has been overwhelming.
“With rare diseases, government funding into research to find a better quality of life, or eventually a cure, is even more rare,” Mr Bond says.
“The support has allowed us to make serious inroads on an international scale into medical research.”
Sponsors of the event include SA companies CMI Toyota, Spartan Electrical and ResourceCo, just to name a few.
Since starting the foundation, Captain Courageous has raised more than $2 million for research.