Although Sarah Webb was diagnosed with type 1 Neurofibromatosis when she was less than one year old, she refuses to let her disease become her life.

"We had gone over to England for my sister's wedding (when Sarah was less than a year old)," explained her father, Martin Webb. "Sarah got food poisoning. We took her to the hospital and one of the more observant doctors noticed what we call `cafe au lait' marks on her skin."

The doctor knew that such marks could signal Neurofibromatosis, and sure enough Sarah was diagnosed with the disease.

Usually passed down through the family, Mr. Webb said that in Sarah's case the disease was a spontaneous mutation. It causes various complications such as the formation of benign tumours in the soft tissues of her skin, especially in young children. Brain tumours are common - and when doctors started noticing a sudden and rapid loss of vision in Sarah's right eye several years ago, they realised just such a brain tumour, sitting on her optic nerve, was the cause.

Two and a half years of chemotherapy later, the tumour was gone and all appeared to be smooth sailing for Sarah - until doctors started noticing scoliosis, or an abnormal curvature in Sarah's spine - yet another complication of Neurofibromatosis.

"At first it was slow, and she's been in a body brace for about three or four years," said Mr. Webb, as Sarah ran to fetch the brace from her room.

"She's supposed to wear it all the time," Mr. Webb added as she returned clutching the brace, "but as you can see ... "

"It's difficult to breathe in, and to eat," explained Sarah. "Naturally it's pretty tight and uncomfortable," said her father.

"In November (of 2002) doctors noticed a marked advancement (in the scoliosis) and said they had to operate within the next 18 months."

That operation is scheduled at Toronto's Sick Kids hospital in June.

It will fuse Sarah's spine, halting the curvature but also ensuring her spine will never grow and she will never be able to bend over properly again.

"She'll have to rely on her legs growing to get taller," said her father.

At nine years old and in grade four at Mount Saint Agnes, Sarah is already the tiniest student in her class. It takes less than five minutes with her, however, to realise she does not let that worry her.

Even the discovery that she will not be able to swim after her operation could not dampen her spirits.

"Ever?" she said in dismay when her mother told her the news. "For at least a year - maybe next summer you can swim." To which Sarah simply made a face and patted her dog, Misty.

"She's a positive kid," said Mr. Webb. "As a family we are no different than any other regular family. Sarah's normality is probably a little different than other kids, but she's a bright kid. We can only do the right thing, what's best for Sarah."

"It could be a lot worse," pointed out Mrs. Webb. "We're very thankful for Sarah," agreed her father. "You spend a little time with her and she could teach you a lot. It's not a key thing we think about - Sarah's just Sarah."

In fact, the family said it always took them aback when people wanted to do things for Sarah because of her disease.

A group calling themselves `The Friends of Sarah' have arranged a Spring Walk to raise money for Sarah on Sunday, May 18 from the Botanical Gardens to the Hamilton Princess (sign-up is 2.30 p.m. at the Botanical Gardens).

The family does have good health insurance which covers most of the costs of Sarah's medical treatments, although should it be needed Mr. Webb said they would be "very humbled and thankful" to accept the money raised on Sarah's behalf.

As it stands, however, he said the family would have to think very carefully about how to use the money raised from the walk. "It's nice to have people wanting to do something but there are other needs, far greater needs than Sarah's. It's a question of how we wish to re-direct those funds - obviously with the approval of the charity," said Mr. Webb.

"It's kind and sweet," said Sarah, when asked what she thought about the effort to raise money for her.

As for the operation: "I'm kind of scared and worried it won't turn out well." Her doctor took time to go through all the potential problems with her, however.

"He said I might die but it had never happened before," she said matter-of-factly. "He also said I might go blind but that might not happen. It hasn't happened in a long time, which makes me feel a lot better."

And although she will have to be physically careful after the operation, Sarah's active mind will not be slowed at all. An avid piano player, she also loves school and reading books - so much that, as she told her father, she had to stop reading one "Harry Potter" book as she waited for him to catch up to her.

"If we can go through chemo, the feeding tubes in the stomach, everything - there's nothing we can't do," said her mother. "We've dealt with it before, we'll deal with it again."

`Life's too precious," added Mr. Martin. "We're concentrating on the ups."

And the ups in this case? "It's so nice that it can bring people together in a positive way," said her father.

"But then, Sarah tends to do that."