Tauranga girl facing future with courage

By ROSALEEN MacBRAYNE

Diane Wilson is a little battler.

Born with the rare Crouzon's syndrome, which meant the bones of her skull were fused, the Tauranga girl made New Zealandhistory in April 1999 when shehad dramatic reconstructive surgery.

Doctors at Middlemore Hospital in South Auckland aligned her distorted face and gave her cheek bones.

It was a new lease on life for a child who had suffered years of being stared at and taunted by other kids because she looked different.

But now Diane's rebuilt face is sinking in again, her breathing problems and headaches are back, she coughs constantly and the lids cannot close over her protruding eyes.

Next year, she will have to repeat the agony of having an expanding metal gadget fitted inside her skull to separate the bones.

For weeks afterwards her mother, Susie, a trained nurse, must tighten the protruding ends of steel rods (distractors) on each side of Diane's head.

The daily excruciating wind-ups are to create gaps where new bone can grow - something that did not happen as expected after the last operation.

Although dreading the prospect, the bubbly little girl is focusing first on her 11th birthday next Wednesday, when she will go out for dinner and have a friend stay overnight.

With 15 major operations already behind her, she has always known she will need on-going surgery until her 20s, when she finishes growing.

For a child who had a tenuous hold on life for the first few years and whose twin, Jennifer, died at birth, each year is a milestone.

She takes comfort from the fact that this birthday could be the half-way point to having a face that doesn't need constant restructuring.

With a confidence and maturity beyond her years, Diane says she copes by being positive.

"I don't like it [hospital] but I stick to the good side of it."

Which is? "I get lots of presents and stuff."

She is already excited about Christmas and her wish-list includes a new talking doll, a bandanna - "to keep my head warm and cover my scar" (she had 250 stitches where her scalp was reattached) - and some chocolate money.

Diane gives encouragement to a 10-year-old penpal in Wellington who has a similar medical condition. She is also behind her mother's plan to organise a fashion show next year to raise money for a trust for other Tauranga children facing difficulties.

As for herself, Diane says matter-of-factly: "I take it as it comes."