Tom Goode to run pub fun run for best friend’s courageous son
When Tom Goode’s best friend had a son within 12 hours of his own and unknowingly named him Angus too, it was an incredible coincidence.
But it makes what happened next even more poignant.
While Mr Goode’s son is a healthy 6-year-old, his friend Jeff’s son was diagnosed with a rare bone marrow disorder Diamond Black-Fan Anemia, when he was eight weeks old. Only 800 people have it worldwide.
To keep young Angus Bond alive he needs a blood transfusion once a month.
So far, he has had 71. By the time he is 20 he would have had more than 250 transfusions. That is the same amount of blood contained in 50 grown men.
His bone marrow failure means his body does not produce enough red blood cells to transplant oxygen around the body. It can be life threatening and there is no known cure.
“He is an amazing little boy and hugely courageous,” said Mr Goode, 39, from Allambie Heights, who also has a daughter Edie, 8.
Mr Goode will be running in the Pub 2 Pub fun run from Dee Why to Newport on August 24, to raise money for the Captain Courageous Foundation, set up by Angus’s family to fund research into bone marrow diseases.
Unlocking the causes of these rare diseases could potentially lead to a breakthrough for more common blood diseases such as leukaemia.
There has already been some success by researchers funded by the foundation, according to mum Jess, 39, although sadly it won’t help Angus.
“We may not find a cure for Angus, but we may be able to help others,” she said.