An early Christmas for Lilly the battler

JANINE RANKIN
Last updated 12:00 14/11/2012
Lilly Standard
DAVID UNWIN/Fairfax NZ
WISH COMES TRUE: Lilly Thoresen-McKay, 3, opens her presents that she received from the Make-a-Wish Foundation.

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Palmerston North preschooler Lilly Thoresen-McKay's first three years have been overshadowed by life-threatening medical crises and complications.

But at last, her parents Tina Thoresen and Luke McKay, who donated her a slice of his liver two years ago, are celebrating her survival.

The last life-and-death moment was in February, she had her naso-gastric feeding tube out in May, she's just had the all clear from Starship children's hospital in Auckland that her post-transplant cancer is in remission, and she's been approved to start going to day care.

The family celebrated yesterday with a visit from Make-a-Wish Foundation volunteers Neil MacInnes and Carol-Anne Earley bearing a basket of toys and gifts.

"We're just so proud of her - she has come so far," said Mrs Thoresen.

"Most of the time she can do normal stuff like other kids, which we really love.

"We just have to be careful of bugs, because her immune system is so suppressed."

Lilly was just 9 weeks old when she was diagnosed with the liver disorder biliary artresia.

She soon captured many hearts in Manawatu in her desperate struggle for survival as her parents focused on keeping her safe, hoping she would grow big enough and strong enough for a transplant.

In May 2010 her father went into surgery to have a section of his liver removed to replace Lilly's.

The surgery went well, but in September, back home in Palmerston North, she became so ill she needed urgent blood transfusions before being airlifted back to Starship, where she stayed until Christmas.

"We nearly lost her. It was 50-50," said Mrs Thoresen.

Lilly was diagnosed with post transplant lympho-proliferative disease (PTLD), a complication the family had been warned was a possibility.

PTLD behaves like cancer, and is treated with chemotherapy drugs.

Then again, last year, on the anniversary of the transplant, the assessment turned into another 17-week stay at Starship, and several "crashes" where she nearly died.

In October last year she was home to stay, apart from regular trips back to Starship, one of which turned into another near-fatal incident in February, and a sleepless night for parents and staff, before she skipped out of bed like nothing had happened the next morning.

Settled at home now, and facing only quarterly checkups in Auckland, the family is planning some "give-back" efforts to help those who have helped them.

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They will be running barbecues to raise funds for Ronald McDonald House in the lead-up to Christmas, using sausages donated by Mr McKay's employer The Mad Butcher.

The Kids Foundation is also on the list for thanks.

But yesterday, it was all about Lilly and her new toys.

- © Fairfax NZ News

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