Willamette student dies after battle with ALS

The 22-year-old kept pursuing goals after his diagnosis in June

BETH CASPER
Statesman Journal

November 12, 2006

Kalan Morinaka, a senior at Willamette University, died Thursday of complications from Lou Gehrig's disease.

Morinaka, 22, was diagnosed as having the progressive neurodegenerative disease in June.

Amyotrophic lateral sclerosis, or ALS, attacks nerve cells in the brain and spinal cord, causing people to lose control of their muscles. Most people's minds remain unaffected.

Typically, people who develop ALS are between 40 and 70, although one in 10,000 cases are found in people in their early 20s, according to the ALS Association.

For Morinaka, the disease progressed rapidly. His symptoms began with slurred speech about a year ago. He was given a few years to live at initial diagnosis, but in October, Morinaka was told he had two weeks to two months to live.

His death has had a tremendous impact at Willamette University.

Morinaka was a leader on campus -- as the president last year of fraternity Sigma Alpha Epsilon, a supervisor of intramural sports and a member of the psychology and chemistry clubs as part of his pre-med course track. He was a big football fan, cheering Willamette's Bearcats at every game and playing flag football for the intramural teams.

"It is a small campus as it is," said Adam Beebe, Morinaka's roommate for two years. "People in his classes became good friends with him. And even if they didn't know him personally, everyone knew him."

Morinaka was the guy who could cheer up anyone in a bad mood, supply a joke or a laugh in any situation and notice if someone was having problems, his friends said.

"He was an amazing soul," said Willamette senior Noelle Matthews. "Truly genuine. So giving. So conscientious."

The news of his terminal illness did not keep Morinaka from his goals. He worked with disabled children this summer in Salem and started his last year of college fully intending to graduate.

"Kalan was just amazingly strong," said his longtime girlfriend Rebecca Knight, a Willamette University senior. "No one would have known there was anything wrong, and that's how he wanted it."

Knight cared for Morinaka when his condition deteriorated this fall. He needed a feeding tube because of his inability to swallow.

By the time Morinaka went home to Nyssa three weeks ago, the disease had taken away his ability to talk.

But it hadn't taken away his ability to touch his friends and family.

Three days after he left Willamette University, his fraternity friends -- on Morinaka's request -- held a ceremony to give Knight his fraternity pin and a heart-shaped promise ring.

In Nyssa, just south of Ontario, Morinaka's younger brother Tanor, 15, would come home from football practice and sit by Kalan and tell him all the details of practice. Then he would lie on the floor of Morinaka's bedroom to finish his homework.

Morinaka's older brother Chase, 24, came home from law school to be with Kalan.

"All three boys are very, very close," said Patricia, Morinaka's mother.

The family already was aware of Kalan's wishes surrounding his death. Earlier this year, his parents, Patricia and Noble, discussed using life support and drafting a living will.

Kalan also talked to his family about using Oregon's Death with Dignity Act. Taking the lethal medication was not an option by the time Kalan went home to Nyssa because he could not travel back to Portland for the required doctor's appointments.

"We did not fully understand that the Oregon law is such that once you decide, you have to see a doctor who will prescribe the medication," Patricia Kalan said. "And you have to have a second doctor confirm that your diagnosis is terminal. Then two weeks later, another appointment and you either confirm or change your mind about medication. We did not fully understand that."

Kalan likely would not have taken the medication anyway. His disease progressed so quickly that his parents could notice a substantial decline in his condition every day.

"When he was home, we could see every day he was losing more function in hands and losing the strength in his legs," she said. "He had lost the strength in his neck to hold his neck up for any length of time. We could actually see the changes. ... He could no longer hold the TV remote. It would just fall out of his hand."

The one thing Kalan could continue to do was send text messages. He stayed in constant contact with his friends and his girlfriend, Knight, while he was home. The day before he died, Kalan made Knight laugh by sending her a text message about being willing to pay $100 for a Chinese-food buffet.

The next day, Kalan's condition changed suddenly. He became unresponsive and died within 45 minutes, Patricia said.

"This is an ugly disease -- a very, very ugly disease," Patricia said. "It would be wonderful if in our lifetime that a treatment or a cure could be found. It is so awful to watch someone die a millimeter at a time. And there is nothing you can do."

Patricia said she asked Noble a previously unthinkable question: Did you ever think we would wish our son had cancer?

"For cancer, there are treatments and cures," she said. "For ALS, there is nothing. We are not much further advanced in the treatment of ALS than when Lou Gehrig was diagnosed with it."

bcasper@StatesmanJournal.com or (503) 589-6994
http://www.statesmanjournal.com/apps...611120313/1001

So unfair! I am struggling to read Stephen Levine's book, "A Year to Live". How to live this year as if it were your last.

This young man, Kalan Morinaka, didn't need to read a book to know how to live....he just went ahead and did it!