Marching on
Family appreciates community support

Darrell Greer
Northern News Services

Rankin Inlet (May 10/00) - Nothing about their daughter's behaviour as a toddler struck Rankin Inlet's Chris and Lynn Rudd as odd.

Alexandra crawled with the boundless enthusiasm of all kids that age.

But when she was two years old, they discovered she had a problem.

Lynn was pregnant with the couple's second child, Katherine, when they went to the home of Chris's mother in Powerview, Man., for her to have the baby.

Chris and Lynn thought it was cute the way Alexandra always held their hands when walking. But Chris's mom, a nurse with a long history in pediatrics, became concerned when she saw it.

The little girl was sent to a neurologist who ordered an MRI, which revealed tumours on her optic nerves. She was completely blind in one eye.

Alexandra was suffering from neurofibromatosis (NF1) -- a genetic disorder that can cause tumours to grow on the nerves at any location, at any time.

"She had mapped out our home and the store where Chris worked and could get around no problem, so we didn't realize something was wrong," says Lynn.

After seeing an oncologist, Alexandra began 18 months of chemotherapy on Jan. 2, 1996.

"I've gone through grief, denial, anger, shock and, finally, acceptance," says Lynn.

"At first I was just angry, but you have to accept it and move on."

These days, Lynn studies every bit of information about the disease. She wants to be ready if it strikes again.

"If something happens in the future, I want to be able to tell the doctors what to look for," says Lynn.

"That was one of the most frustrating parts at the beginning, even the doctors knew so very little about it.

"That's why we decided to tell our story, because awareness is so very important."

The Rudds say people often mistake Alexandra's disease for elephant man's disease -- an extreme form of neurofibromatosis -- which it is not.

The two say they are happy their daughter was surrounded by so many caring people in Rankin.

"The adjustment to school was very difficult," says Chris.

"She gets frustrated if there's too much visual activity and lashes out. We've been fortunate with her teachers. Cheryl Forbes has been absolutely fabulous with her, as have Madeline Sandy and Kim Faulkner."

Alexandra's struggle is not over, and she will be monitored for the rest of her life. But the Rudds take it one day at a time.

"We never lived with the spectre of the future hanging over us," says Chris.

"We want her to be treated as much like anyone else as possible."