'I wish I could take the pain away'

JONATHAN CAMERON/The Manawatu Standard

MERCY FLIGHT: Four-month-old Lilly Thoresen-McKay needs a liver transplant and will be flown to Starship Hospital on Monday for a transplant assessment with her parents Luke McKay and Tina Thoresen.

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Happy, smiley little Lilly cries when she sees needles and medicine heading her way – in her short life she's learnt to anticipate pain.

Four-month-old Lilly Thoresen-McKay has biliary atresia, a rare liver disease that affects one in 100,000 babies and eventually requires a liver transplant.

But for Lilly, that time has already come.

After weeks of scans, operations and treatment, parents Tina Thoresen and Luke McKay have been told they cannot not wait any longer.

Born early at 36 weeks on July 16, Lilly received phototherapy for slight jaundice and was discharged the next day.

But at nine weeks' old she was rushed to hospital when her eyes and skin turned bright yellow, Ms Thoresen said.

Despite her voracious appetite, Lilly was not putting on weight and doctors advised her anxious, first-time parents that her pale stool was not normal.

She underwent a Kasai operation at Wellington Hospital to relieve some of the symptoms and prolong the need for a transplant until she had grown.

Two weeks ago Lilly woke up whimpering, she was so hot her parents could not even pick her up and she would not feed, Ms Thoresen said.

"I thought, something's wrong, that's not like her.

"With her condition we had to get on to it straight away."

And she had started to go yellow again, she said.

"On Monday they gave us bad news that her blood tests had come back quite bad," Ms Thoresen said.

The family are to be flown up to Starship Hospital in Auckland for Lilly to have an assessment for a liver transplant on Monday.

"There is a balance between seeing how urgent she needs it and trying to get her to grow as much as she can," Mr McKay said.

"I just wish I could take the pain away from her and make it better... I would hate to see another family go through this."

Lilly knew the treatment room at Palmerston North Hospital and would start screaming as soon as they entered, she said.

The formula Lilly was being fed meant a whole new wardrobe was needed to keep up with her growth, Ms Thoresen said.

"She suits every colour but she is not allowed to wear yellow."

Mr McKay's boss, Mad Butcher franchisee Wayne Gerrand hoped to support the family throughout Lilly's treatment.

A bank account would be started in her name and the company hoped to start fundraising as soon as possible, Mr Gerrand said.

LIVER FACTS

Biliary atresia is a rare disease that affects the livers of young infants.

It is when the bile ducts that carry bile from the liver to the intestine are damaged or absent.

It causes jaundice in the skin and eyes, dark urine and light coloured stools, and often prevents weight gain.

Most children with the congenital disorder require a liver transplant eventually, but usually treatments can be given to prolong it until they are of age.

- © Fairfax NZ News