Boy with rare illness lives life with a smile

OLIVIA CARVILLE
Last updated 05:00 03/06/2013

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Finlay Aitchison may have been born two organs short, but the 5-year-old is certainly not lacking in heart.

The Christchurch boy is one of only 30 people in the world to be born without a pancreas or gallbladder and is the first documented case of pancreatic agenesis in New Zealand.

Finlay, which fittingly means the fair-haired courageous one, is considered a miracle by doctors.

His life is ruled by his exceptionally rare condition but little Finlay takes every day in his stride, including yesterday when he hit the asphalt in his running shoes.

Armed with his frog-covered insulin backpack and holding his mother's hand, Finlay completed the three-kilometre kids Mara-Fun race in honour of his home away from home - Ronald McDonald House, which he lovingly calls ''Old McDonald's House''.

''His heart didn't let him go as fast as he wanted to but he had a whale of a time,'' father Alan Aitchison said.

Finlay came 374th out of 378, with a time of 34 minutes and 19 seconds. His parents found out that Finlay had a hole in his heart when mother Vicky was 20 weeks pregnant. Doctors said the heart defect was complex and there was a chance he might not survive birth.  

Vicky was admitted to Auckland Hospital to be as close as possible to the Starship children's hospital paediatric team in the weeks leading up to the birth as they found the baby had stopped growing.

His birth weight was little more than 1 kilogram and for the first week of his life Finlay lay in an incubator amid an array of tubes fighting to survive. At nine days old it was discovered he had no gallbladder or pancreas.

His doctor, who had never seen the condition before, studied it overnight and found grim results.

''I looked down at the list of cases and beside each name was just the word 'dead, dead, dead, dead','' said Alan, who works as a scientist at Christchurch's University of Otago medical school.

One of the first terms to pop up alongside pancreatic agenesis in Google was: ''Not compatible with life,''  he recalled.

In the 1970s and 1980s all documented cases had died. The first survivor was listed in the early 1990s.

Due to advancements in medicine and the hasty diagnosis, Finlay, who was born with diabetes because of his condition, was the youngest New Zealander to be fitted with an insulin pump at just 10 days old.

Now his parents have to use a 10-centimetre needle to change the insulin site in his thigh every three days.

He needs four nutrient-dense milk drinks a day, about a dozen digestive enzyme pills and his blood sugar levels need to be tested at least 10 times, an art he has already mastered himself.

''He is an amazing wee boy. He is just so stoic and always has a smile on his face yet he is going through so much,'' Vicky said.

"The doctors think of him as a miracle but to us he is just Finlay; he is just our son."

Despite being a tad smaller than most of his classmates at Somerdhfield School, Finlay generally looks healthy but his parents get an unnerving reminder of his fragility every now and again.

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Just over a week ago Finlay suffered a seizure. Lying in his mother's arms in between shakes, he looked up and cried: ''Make it go away, Mummy''.

''It's times like that you realise how fragile he really is,'' Vicky said.

With Finlay's diabetes under control and yearly checkups to monitor his heart, doctors predict he will live a long and happy life.

To support Finlay, click here.

FINN'S FACTS

Finlay finished yesterday's Mara-Fun, with a time of 34 minutes and 19 seconds.

Pancreatic agenesis is an exceptionally rare condition, affecting only 30 people worldwide.

Sufferers are born without a pancreas or gallbladder and usually have an array of other health concerns.

They are also born with diabetes due to a lack of a pancreas.

Sufferers need an insulin pump and daily intakes of nutrients and digestive enzymes to absorb food.

In the 1970s and 1980s there were no survivors of pancreatic agenesis.

The first documented survivor was in the 1990s.

Finlay Aitchison is the only person in New Zealand to have suffered the condition.

- The Press

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