Trans­plant only op­tion for brave Aria

Auckland City Harbour News - - News - By William Mace

Anita and Hamish MacDon­ald are on their way to a “hospi­tal-free” month, a re­mark­able achieve­ment in their daugh­ter Aria’s short but event­ful life.

At 21 months Aria is most com­fort­able at home among dolls, trikes and her new brother Asher but she has spent much of her life in the less homely cor­ri­dors of Star­ship hospi­tal.

She is bat­tling a rare con­di­tion, to­tal in­testi­nal an­gliono­sis, which means she can­not digest food in the way oth­ers can.

Her bowel has none of the nerve cells that in a healthy per­son would de­tect and move the food along the gut for di­ges­tion. In­stead, nu­tri­ents are fed di­rectly into her blood­stream via a per­ma­nent line through her shoul­der.

Ini­tially Aria’s par­ents were told noth­ing could be done to save her.

But in­stead of giv­ing up the cou­ple are bring­ing up a healthy daugh­ter and will con­tinue do­ing what they do un­til they can raise enough money for a bowel trans­plant.

Sac­ri­fices are par for the course for the fam­ily – Aria spends 14 hours a night hooked up to a feed­ing ma­chine, Hamish shares his time be­tween hospi­tal vis­its and work at the Fisher & Paykel con­tact cen­tre, and Anita now has two in­fants to worry about.

Anita says she is ner­vous about the goal of stay­ing out of hospi­tal this month be­cause Aria usu­ally gets sick about ev­ery six weeks.

Ev­ery­day bugs are a se­ri­ous threat.

Nor­mal chil­dren might get a sim­ple cough or stom­ach bug but Aria’s tube is a per­fect home for harm­ful bac­te­ria and she is un­able to ex­pel them in the nor­mal way.

The in­fec­tions can be­come life-threat­en­ing and re­quire lengthy hospi­tal stays.

The cou­ple say af­ter Aria comes out of hospi­tal she’s like a new girl but they hope the vis­its will one day be un­nec­es­sary.

“Ev­ery visit sets us back,” says Anita. “But we wouldn’t have it any other way be­cause that would mean Aria wouldn’t be with us.”

Aria’s de­vel­op­ment is im­prov­ing de­spite all the surgery and hard­ships she’s had to face.

Anita says she is ly­ing prop­erly, sit­ting up and stand­ing in the hope of tak­ing some steps.

“She’s be­hind a lot of kids but in terms of where she’s come from it’s re­ally good progress.

“Even at the hospi­tal, she’s bet­ter with it than we are some­times, al­though she gets a lot of at­ten­tion there. “She’s very strong.” The MacDon­alds want to help her take the steps to­wards the best life she can have but the cost is enor­mous.

The fam­ily would need to move to the United States for about nine months of test­ing even be­fore Aria was ac­cepted for a trans­plant.

They es­ti­mate it would take three years all up with liv­ing costs of up to $400,000.

And the trans­plant is not cheap.

“It is risky and dif­fi­cult but it is her only op­tion so we’re just de­ter­mined to get that for her.”

The MacDon­alds say they are grate­ful to have con­sid­er­able help from friends and fam­ily to or­gan­ise fundrais­ing to­wards the huge tar­get.

“It’s a pretty tough thing for us to look af­ter two kids and work and try and do all the fundrais­ing so we get a lot of help from oth­ers.”

The next fundrais­ing event will be a din­ner and auc­tion at the Manukau New Life Church on April 5.

Tick­ets at $50 a per­son are avail­able at Cel­e­bra­tion Cakes in Manukau, call 2793350.

Fisher & Paykel will put an Ac­tive Smart Chest Freezer up for auc­tion while Har­vey Norman has of­fered a 28-inch television.

To do­nate $3, text HELP ARIA to 469, make a bank de­posit to: Aria MacDon­ald Ap­peal Ac­count 12-30320253524-00, or post a cheque to: KIDS Foun­da­tion, PO Box 72-076, Ma­nurewa.

Photo: BEN CAMP­BELL

Feed­ing time: Aria MacDon­ald goes through the familiar rou­tine with dad Hamish and mum Anita as new brother Asher looks on.

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