Family copes with disease
Rankin couple kept positive by youngster's strength

Darrell Greer
Northern News Services

Rankin Inlet (May 08/00) - Rankin Inlet's Lynn Rudd is being honest when she says if her daughter wasn't afflicted with neurofibromatosis (NF), she probably wouldn't even know the disease existed.

But Alexandra, 6, does have NF and Lynn and her husband Chris are all too aware of its affects.

When Alexandra was first born, she seemed completely healthy.

She crawled around endlessly like most toddlers and began taking her first baby steps at a normal age.

When she started walking, Chris and Lynn thought it was cute the way their daughter always wanted to hold their hands.

Things changed when Lynn became pregnant with the couple's second child and the family went to visit Chris's mom in Powerview, Man.

Mere hours after their arrival, Chris's mom, a nurse with a long history in pediatrics, knew something was wrong with Alexandra.

Days later, the Rudd's faced the challenge of their young lives together.

"Once she was diagnosed with NF1 things became clear," says Lynn.

"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."

A neurologist ordered an MRI for Alexandra and the tumours on her optic nerves were discovered.

The young girl is completely blind in her right eye and has 2300 vision in her left.

The tumours are known as neurofibromas and are the most common tumours associated with NF.

The girl was sent to an oncologist and, on Jan. 2, 1996, at the age of two, she began 18 months of chemotherapy treatment.

Although Lynn remained strong through the ordeal, she ran a gauntlet of emotions coming to grips with the situation.

"We've lived with this for the past six years and have learned to accept it," says Lynn.

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

Chris smiles and he recollects Alexandra's mood through the ordeal, making it clear his daughter's outlook helped keep her parents optimistic.

"When she'd play, she'd always want to give you a check-up or a needle because she had more contact with doctors and nurses than anyone else," says Chris.

"One of the main reason we didn't sink into depression during the difficult times was that Alexandra remained so upbeat.

"She felt like she was fine and, really, this was the only life she knew."

The Rudds hope the worst is behind their daughter and these days Lynn pours over every bit of information on the disease she can get.

"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."

Although Chris and Lynn hope the worst is over, the tumours which took Alexandra's sight can grow on any nerve ending.

Because of that and other possible complications, she will have to undergo testing for the rest of her life.