BRODIE FIGHTS RARE DIS­EASE

Mum tells of life turned up­side down

Campaspe News - - FRONT PAGE - By IVY JENSEN

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.

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