June 24, 2005

Oregonian - Portland, OR.

Summary: Taylor and Graham, 2, struggle with a terminal genetic disorder but teach lessons about life's worth
Ian and Kirsten Olsen run what they call an "atypical household."

It's a home where the most important lessons aren't being taught by the parents, but by Taylor and Graham , their 2-year-old twins. Those lessons have led the Olsens to rewrite their definition of a life well-lived.
Changes have marked the couple's lives since Graham and Taylor were stricken with metachromatic leukodystrophy, a terminal genetic disorder with a one- to two-year prognosis . The Olsens learned of the twins' disorder after struggling for more than a year with concerns about their development and with many misdiagnoses.

They never expected anything as serious as MLD.

"The hard part is, initially, when we were going through this diagnostic process, never did it enter our heads that this might be a terminal condition," Ian Olsen said. "It wasn't anything we were prepared for."

That was in October, and the Olsens have been through a lot since, including times when it looked as though one or both of the twins might not make it. Taylor once slept for about 10 days in a row, they said, and Graham has been known to stop breathing for extended periods.

"There's been times that we think we're going to lose them, but they just keep rallying," Ian Olsen said.

The twins have inspired not only their parents but also many friends and family members. Some of them are organizing an MLD fundraiser scheduled for Taylor and Graham's third birthday.

"They wanted a way to celebrate the lives that these kids have lived," Ian Olsen said.

"Walk for Our Two Angels" will begin 4 p.m. July 16 at Millennium Park Plaza in Lake Oswego. A $25 donation is suggested in lieu of a registration fee. The money will be used to pay medical bills, for research and to provide help to other families of children with MLD.

On Monday, all Pizza Schmizza stores in the Portland area will donate half of their sales to the Olsens' Our Two Angels fund.

"We're trying to raise money -- and increase awareness, obviously -- so that another family down the road won't have to go through what we've been through," said Ian Olsen, who owns the West Linn Pizza Schmizza.

MLD is rare, affecting one in every 40,000 to 100,000 people, according to the MLD Foundation. Kirsten and Ian Olsen are both carriers of MLD, but neither is affected. Any child the Olsens have has a 25 percent chance of being affected by MLD.

Braden, their 4-year-old daughter, is an unaffected carrier, like her parents. Tests on a daughter the Olsens expect in August show that she also is unaffected.

For more than a year, the Olsens and Braden experienced the joy of watching the twins grow up normally and learn new things. Since the onset of MLD, though, they've had to experience the opposite as the twins cope with a disorder that has taken away every previously learned ability.

"It's happened really fast," Kirsten Olsen said.

Though it didn't happen all at once, the twins can no longer walk, talk, move or even swallow. They are fed through feeding tubes, are equipped with morphine pumps and have a nurse who monitors them through the night.

Watching the disorder bring their twins to this helpless state, when only months ago they were normal, happy toddlers, has been especially hard, the Olsens said. That, the brushes with death and the times when the twins are in pain are all things you can never learn to deal with, they said.

"There are times when I think -- for their sakes -- that they would be better off in another place," Kirsten Olsen said, beginning to cry. "That's just because you remember how they used to be."

While heartbreaking, Ian Olsen said, faith that the twins will find another place after death comforts the couple and helps them understand what is happening.

"I think you kind of reaffirm your faith in times like this, or else you don't have anything else to hold on to," he said. "We've got to realize that there are lessons to be learned, even if we don't know what they are yet."

Through the twins, many of their friends and family members have developed a greater appreciation for their own children and realized that "life is precious," he said.

"And you can't take anything for granted," Kirsten Olsen added.

Many friends and family members have dropped by the house to spend time with the twins. At a time when keeping the twins comfortable is their primary concern, Kirsten Olsen said it's nice to have people around to hold them.

"As long as they're comfortable, they're in a good place," she said. "They're held a majority of the time."

Though the Olsens may not have discovered all the lessons there are to learn, witnessing what the twins have meant in other people's lives has led them to at least one conclusion.

"I've learned not to deem longevity as a life well-lived," Ian Olsen said. "They've affected many people. It doesn't make their lives less meaningful that they're not going to live into their 80s. Their lives are marked with great purpose."

Brandon Gee: 503-294-5947; brandongee@news.oregonian.com