Help­ing hand for haemophil­i­acs

The Riverine Herald - - NEWS -

FOR the par­ents of Archie McCann and Kelly Hork­ings, no one saw what was com­ing when they were just six and eight months old.

Both chil­dren were di­ag­nosed with se­vere haemophilia, a ge­netic blood dis­or­der that is in­cur­able.

But, you wouldn’t tell that they had the dis­ease.

‘‘Peo­ple with he­mo­philia live a nor­mal life,’’ said mum Tara Hork­ings.

‘‘The boys know their bar­ri­ers, but we try to give them a nor­mal life.

‘‘They play footy, they run around, they do the ad­ven­tur­ous, play­ful, cheer­ful things that any child that age would do.’’

What is nor­mally a ge­netic dis­or­der, with a fam­ily his­tory, nei­ther of the kids had that his­tory, so it came out of the blue.

But, through fur­ther tests, the moth­ers found out they were car­ri­ers of the dis­ease.

‘‘It means that we have a gene for haemophilia, but be­cause fe­males have two X chro­mo­somes, we don’t suf­fer from it,’’ said Kasey McCann, mother of Archie.

The big­gest con­cern for the boys is the in­ter­nal bleed­ing they can get from some­thing as sim­ple as crawl­ing.

‘‘It was the tough­est time, es­pe­cially for Archie, be­cause he was just start­ing to crawl and later walk,’’ Kasey said.

A de­vice called a port has been in­serted un­der the boys’ arms for con­tin­u­ous treat­ment, which en­tails in­jec­tions of the syn­thetic fac­tor eight gene.

Kelly has treat­ment three times a week, but Archie has to have the treat­ment every sec­ond day and re­ceives larger doses.

Both boys also travel to the Royal Chil­dren’s Hos­pi­tal in Mel­bourne for half-yearly check­ups.

This week is Bleed­ing Dis­or­ders Aware­ness week and the boys and their fam­i­lies will be hold­ing a red cake stall out the front of Cot­ton On in Hare Street this Satur­day, Oc­to­ber 14, from 9-11am.

To get in­volved with fundrais­ing or rais­ing aware­ness visit www.haemophilia.org.au or HFA on 1800 807 173.

BLOODY GOOD JOB: On Satur­day Archie McCann and Kelly Hork­ings will be help­ing their moth­ers raise funds for, and the pro­file of, Bleed­ing Dis­or­ders Aware­ness.

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