Sunday Herald Sun - Stellar - - Contents -

learns the true mean­ing of love from one brave fam­ily.

More chil­dren die from brain can­cer than any other dis­ease. It is a dev­as­tat­ing fact. But while statis­tics can make us pause for a mo­ment, they don’t tell the whole story. Each statis­tic is a per­son. A per­son who feels pain, a per­son who fights bravely, they are part of a fam­ily.

Re­cently thathat hor­ri­ble statis­tic be­came very real eal for the Darch fam­ily and their four-year-oldyear-old boy, Bede. Cheeky, spir­ited, de­ter­mined mined lit­tle Bede.

Born in early ly 2013, Bede didn’t sleep much in the early days and seemed out of sorts. A lit­tle boy who, at just a few ew months old, was di­ag­nosed d with a large tu­mour in the cen­tral core of his brain. A lit­tle tle boy given just weeks to live. ive.

From there the bru­tal roller-coaster oaster ride that is brain ain can­cer be­gan. Years of f in­tense treat­ment and d hos­pi­tal stays. Scans, re­sults,esults, fear.

When I met t Bede, he was three and was be­ing fed in­tra­venously usly at home, he was on 14 dif­fer­en­tiffer­ent drugs, and spent most st of his day in a high level of dis­com­fort.

Watch­ing Bede’s mum, Issy, and d dad, Roy, was a con­frontingn­fronting crash course in n car­ing for a ter­mi­nal­lyly ill child. Issy was cau­tious about talk­ing to the cam­eras, scarred from the re­ac­tion to a bravely hon­est blog post she wrote a few weeks ear­lier where she poured out her heart: The truth is I want my son to die. He is tired. I want peace for him, rest. Issy de­served sup­port. In­stead, she was met with mis­un­der­stand­ing and crit­i­cism. A de­voted, lov­ing mother w who woke up eight times a night to help her sick boy, a mother who’s been calledca in to hos­pi­tal to say goodby good­bye to her son mul­ti­ple times. De­spite the traum trauma this fam­ily was liv­ing t through, there was a pos­i­tiv pos­i­tiv­ity and joy that filled ever ev­ery room. A rich life be­ing lived. It was at theth Darch fam­ily home t that I learnt the tru true def­i­ni­tion of f fam­ily – of broth­erly l love. Bede’s big broth­er­brot Gus, lay­ing nose to nose with Bede, cal calm­ing him with his voice, his laugh­ter, h his love. Last month, B Bede left this world. Af­ter a three­and-a-half-year bat­tle,b the pain was over.ov He passed away i in his mother’s ar arms. In tru true Bede form form, he de­fied pro prog­noses and ex­pec­ta­tions right to the end. In the months be­fore his pass­ing, he was thriv­ing. He had learnt to sit again and was close to walk­ing, he was at­tend­ing kinder­garten, loved mu­sic, swim­ming and the park. While he could not speak, he could sign, and Issy says he mim­icked the words “I love you” back to her.

Bede’s fam­ily de­scribe him as: A mir­a­cle of medicine and love. To fam­i­lies still fight­ing we would say Bede’s life is a tri­umph not a tragedy; hold the faith.

His life was an ex­am­ple of hope and taught us im­pos­si­ble is noth­ing.

Bede led a peace­ful yet de­fi­ant protest against brain can­cer. Issy says he was the most in­cred­i­ble, gen­er­ous, ac­com­mo­dat­ing hu­man be­ing who lit up their fam­ily’s life.

I was for­ever changed by meet­ing Bede and his awe-in­spir­ing fam­ily, and I truly be­lieve their strength will save lives in the fu­ture.

To Issy and Roy and your fam­ily, I truly hope Bede is at peace. His light shines on. Car­rie co-hosts The Project, 6.30pm week­nights, on Net­work Ten.

“It was at the Darch fam­ily home that I learnt the true def­i­ni­tion of love”

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