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