BRODIE FIGHTS RARE DISEASE
Mum tells of life turned upside down
AT 15, Brodie Murray should have his whole life ahead of him.
Instead, the former Rochester teen is facing an uncertain future — diagnosed with a rare disease for which there is no cure.
But his family, who now live in Tongala, are determined not to give up hope and want to make the community aware of this illness, which has been described as ‘‘a mix between an autoimmune disease and a cancer’’.
Brodie is among a handful of people in Australia with Castleman disease — a deadly inflammatory disease that affects the body’s vital organs.
Mum Lee Moroney said the past 10 months had been tough going for the family.
‘‘We never knew if we were coming or going,’’ she said.
‘‘We didn’t even know if Brodie was going to make it to Christmas.
‘‘Brodie is in great spirits at the moment and while he is good, we enjoy life because when he is at his lows, he struggles with the day to day.’’
Brodie began showing signs he was unwell in September last year while the family was in Italy at his uncle’s wedding.
‘‘He had been getting headaches, not wanting to eat a lot, which was not normal for Brodie as he loves his food. Two days before leaving he also passed out, something he had never done before,’’ Lee said.
After returning to Australia, Brodie developed a cough that he couldn’t get rid of, flu-like symptoms, runny nose, aches and pains, further loss of appetite, weight loss and increased fatigue.
Over about four weeks, his face, feet and abdomen started swelling — putting on 10kg of fluid — and his urine output had decreased.
That was when Lee knew something was seriously wrong.
Stumping local GPs, Brodie was sent to ERH emergency department for an assessment before being airlifted to the Royal Children’s Hospital in mid-October with what doctors thought was nephrotic syndrome (a kidney disorder).
‘‘His condition did not improve so with multiple blood tests and a kidney biopsy he was found to have
membranoproliferative glomerulonephritis (MPGN) with no known cause,’’ Lee said.
‘‘They needed to find out what was in fact causing MPGN. Again the medical teams at the Children’s were stumped. We had multiple teams trying to work out what was wrong with Brodie.’’
After nine days in hospital with daily blood tests and scans, Brodie was sent home, before eventually being referred to the oncology team.
‘‘This is when my heart sunk. Being a nurse, I knew where this was going. Reality hit. My boy could possibly have the dreaded C word,’’ Lee said.
After bone marrow and lymph node tests and a PET scan, Brodie was diagnosed with idiopathic multicentric Castleman disease in December.
‘‘I remember the oncologist saying to me he does not have cancer, which is great, but he does have this rare disease that we do not know a lot about,’’ Lee said.
Since his diagnosis, Brodie has been able to fight off the disease and has not needed any treatment but requires check-ups at the RCH every six weeks to ensure his organs are not flaring up.
‘‘He has had a couple of episodes where his kidney readings have been elevated,’’ Lee said.
‘‘He’s pretty good at the moment but has his slow days when he is tired and is in a bit of pain.
‘‘While he’s doing well, he won’t need treatment but treatment is on standby which will be infusion every three weeks at the RCH, which isn’t cheap.’’
Brodie has also agreed to be part of research into the disease and has had his tissue samples sent to the US for further research by a team led by Dr David Fajgenbaum, who was diagnosed with Castleman disease in 2010.
‘‘We still do not know what has caused this disease, all I know is that we have a great support team worldwide in the fight for the cure for Castleman disease and we are on the way to finding a way of beating this horrible disease,’’ Lee said.
ACCELERATE is the first-ever global patient registry and research study of Castleman disease between the CDCN, Janssen Pharmaceuticals and the University of Pennsylvania.
And with July 23 being the inaugural World Castleman Disease Day, Brodie held an awareness day at his school — Kyabram P12 College, where students are encouraged to wear blue.
For information about the disease or to donate, visit www.cdcn.org
The disease causes Brodie Murray’s face to swell.
■ Joshua and Brodie Murray and their mum, Lee Moroney, are fighting for a cure for Castleman disease.