About Aria « Aria MacDonald

About Aria

Friday, 10/11/06 at 8:35 pm by Anita MacDonald

Aria MacDonald

Aria MacDonald

Aria was born on Saturday 3rd June, 2006.

Two weeks later she was diagnosed with a very rare condition of the bowel known as total intestinal aganglionosis or total Hirschsprung’s disease. There is no cure and it means she would never be able to digest food.

Total intestinal aganglionosis is where there are no nerves cell throughout the entire bowel to squeeze the food along to be digested. Hirschsprungs is common where a portion of the bowel contains no nerves and can be fixed by removing the effected portion of bowel and reconnecting the healthy remaining bowel. Aria’s form of the disease means this is not an option because there is no healthy bowel.

This news was devastating to her parents Hamish and Anita who were told that nothing could be done to save their baby. It looked like the end of the journey for Aria but really it was the start of something amazing. Dear friends visited the next day and brought hope. That hope was the possibility of a bowel transplant and also the idea of Aria going home on TPN (total parental nutrition).

Aria has now lives at home with Mum and Dad and receives her ‘food’ thru her Hickman line in her shoulder directly into her blood stream. She also has a gastrostomy that drains her stomach of the bile that has no where to go.

Life is not straight forward however. Aria faces the threat of line infections as bugs can easily get into Aria’s blood stream thru her Hickman line. Connecting her to TPN each night must be done under sterile conditions to avoid this. TPN is also very hard on the liver. For babies that live only on TPN the risk of liver failure is high leading to death. However one year on Aria’s liver results are testing NORMAL! Amazing!

There is also a problem with Aria’s kidneys. Her condition is because of a genetic flaw in her DNA which has also caused her kidneys to be unusually small. This causes abnormal kidney function as her small kidneys are struggling to keep up with her growth. Because of this she will also need a kidney transplant.

Bowel Transplant

Aria’s only hope of long term survival and a chance to eat rests in bowel and kidney transplant. This operation is not done in NZ or Australia but the best place is America with the cost of $1-$2 million US dollars. It is still a risky operation but the odds of survival are getting better as advances in medical knowledge continue.

Her family and friends are busy fundraising for the operation (there is hope the government might pay for this) and the cost of living in America with no income for 2-3 years. Please consider some of the many ways in which you can help out or support Aria and her family. The family is hoping to leave in ’09 for America.

Aria is a bright smiley little girl who handles the trials in her life amazingly well. Her life is a precious gift from God who is taking the MacDonald family on a journey according to His great purposes.

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4 Responses to “About Aria”

Jo Lund
Tuesday, 14/04/09 at 3:05 am #
Good luck Aria! Hamish and Anita, we wish you all the best in helping your beautiful little girl. Our thoughts and prayers are with you.
Loe and light
Jo, Rick, Cadeyrn (6), Tallen (5), Dallandra (3) and Alira (10mths).
xxx
Randy Quick
Thursday, 23/04/09 at 2:31 am #
God has blessed you with a beautiful little girl and God will take care of her.
Heather
Friday, 08/05/09 at 1:25 am #
Bless you, your family, and your beautiful Aria…

My daughter Katie was born with HD and diagnosed at 8 weeks of age. She lost 18.5 cm of colon after pull-through surgery.

Aria and your family will be in my family’s prayers…

Heather
Jeremy
Monday, 22/06/09 at 9:20 am #
God Bless from HuskerNation.