Jennifer and Brian Dorman didn't worry when their son was born without thumbs in 1988.

It could be worse, they knew.

And nothing suggested he wasn't an otherwise healthy, jubilant infant.

"We were just thrilled to have a bouncing baby boy," said Jennifer, who was 17 at the time. "We just went with it."

But a few years later, around the time little Scott underwent surgeries to adapt his index fingers into thumbs and to straighten his right arm, his parents stumbled across a magazine article.

Such thumbless births, the story reported, were common among babies with a genetic disorder, Fanconi Anemia.

A blood test the Coeur d'Alene couple sent to researchers in New York came back positive.

At the time, it didn't mean much.

"It was very rare at the time, not a whole lot of people knew about it," Jennifer said. "There were less than 1,000 known cases in the U.S. when he was diagnosed."

But the full impact would hit them soon enough. The disease that decreases blood cell production and affects bone marrow would throw their son into a battle with cancer, eventually taking his life at 22.

The years of treatment and predictions that Scott wouldn't live into adulthood, Jennifer said, make her eager to help anyone else facing that reality.

So the Dormans are holding a fundraiser this weekend to raise dollars for FA research.

Maybe, Jennifer said, that will ease another family's fight.

"I would have loved to have been more aware and had better treatment for Scott, and better research," Jennifer said on Wednesday, a week before what would have been her son's 23rd birthday.

There were plenty of happy years before things turned bad, Jennifer said.

Scott was active and popular, an avid skateboarder and dirt biker, expert glass blower and bowling fanatic. He graduated from Lake City High School in 2007, and held various jobs around town.

"He knew a lot of people and a lot of people knew him," his mother remembered. "He was a very social, just happy kid."

But in 2009 Scott was diagnosed with tongue cancer, a common symptom of FA.

"It's usually common in somebody who smokes and drinks for 30 or 40 years," Jennifer said. "He was 21 at the time."

A battery of procedures and problems were to follow.

The initial surgery to remove the tumor at Kootenai Medical Center appeared to be successful.

But by early 2010, something wasn't right. Scott was having difficulty swallowing food.

The tumor had grown back, doctors discovered. Examinations and referrals eventually landed him at the Seattle Cancer Treatment and Wellness Center for a 14-hour surgery.

It was no small ordeal. Scott's tongue was completely removed, and replaced with muscle from his thigh.

That followed with eight long weeks of radiation and chemotherapy, then another surgery addressing infection from the radiation.

The litany of procedures left him unable to speak, Jennifer added. Once he returned home last May, he communicated with texting.

"He would text and show me his phone, and I'd say, 'OK!'" she said, adding that phone calls were also replaced with typing messages. "My whole family was non-texters before, until he couldn't talk."

One message she won't forget.

During a visit to the doctor last summer, Scott texted his mother the news.

The cancer was back, and there was nothing anyone could do.

"By then, it was pretty much too far gone," Jennifer said.

That didn't stop her from researching other options, digging for clinical trials.

Scott didn't qualify. The cancer had progressed too much.

"But you try to do anything for your child," she said.

The couple cut back on work to spend time with their only child, she said. But he was gone on Aug. 16, 2010, his 22nd birthday.

"He planned it," she believes.

Jennifer still regrets the dreams Scott never had time to realize, like traveling and owning his own skate park.

But the couple appreciates that many with FA don't make it past 15.

"We were lucky to have him around as long as he was," she said.

The couple plans to hold a fundraiser every year to benefit FA research, Jennifer said.

The Dormans will hold a garage sale this weekend at their home, at 2239 West Shawna Ave. Besides personal items, they will also sell refreshments and gift cards for local businesses.

The sale is scheduled from 9-2 on Friday, and from 10-1 on Saturday.

All proceeds will go toward the Fanconi Anemia Research Fund.

Maybe their efforts will prompt parents to watch for FA symptoms, Jennifer said.

"There are still people around here who don't know much about it," she said. "I'd like to help out anybody else who isn't even diagnosed yet."