‘One of the lucky ones’

  • Photo by Jennifer Schack

    Sean Ornellas plays with a toddler.

  • Caleb Loehrer / The Garden Island

    Sean Ornellas continues the good fight against ALS.

LIHUE — Eight years ago, Sean Ornellas started noticing his hands weren’t working as good as they used to. He kept dropping things and started having trouble climbing ladders at work.

When his legs gave out twice in the same day while trying to climb a flight of stairs, he finally realized, “OK, I can’t ignore it anymore.”

Ornellas went to see a doctor. The diagnosis wasn’t a surprise.

Amyotrophic lateral sclerosis runs in the Ornellas family. The disease had already claimed the lives of one of his cousins and an uncle. His mother had died less than a year after her diagnosis.

“I knew it was a possibility,” Ornellas said Friday afternoon. He sat in a motorized scooter in the Lihue Civici Center, waiting to talk to Mayor Derek S.K. Kawamaki, about a proclamation to create awareness for ALS, a degenerative neurological condition with no known treatment or cure.

So far, Ornellas says, he has been fortunate. Most ALS patients die within three to five years of being diagnosed.

“I’m one of the lucky ones,” he said. “Most don’t make it a year.”

ALS, also known as Lou Gehrig’s disease, was originally named after the famous New York Yankees baseball player who was forced to retire in 1939 after being diagnosed with the illness.

It is a condition that progressively atrophies nerve cells in the brain and spinal cord, but the speed at which it spreads and affects cells differs greatly from patient to patient, and the medical community is still struggling to understand exactly how the disease works.

“No one knows what causes most cases of ALS,” the Centers for Disease Control’s website says. “Scientists have been studying many factors that could be linked with ALS such as heredity and environmental exposures.”

Ornellas summed up the toll the disease has taken on his body in a more concise way.

“It just robs you,” he said.

Ornellas explained that many ALS victims ultimately die when the disease advances to the stage that its victims lose the ability to breathe, as the muscles controlling their diaphragm weaken to the point that they can no longer expand the lungs to pull in air.

“Most of us die from respiratory failure,” he said.

Ornellas crowded into Kawakami’s office Friday afternoon to talk story about the disease and its victims among Kauai’s citizens and to be presented with a mayoral proclamation

“The biggest thing about you guys visiting me and this office is to enlighten and educate me about ALS,” Kawakami said.

He told the small group about some of the ongoing efforts of his administration to make the island more practically inclusive for Kauai residents with disabilities.

The handful of activists and organizers told Kawakami about how Kauai is instrumental in getting services for ALS victims throughout the state — current estimates place the number of people in Hawaii affected by ALS at 61 — and explained the importance of getting the word out to people who may be suffering from the disease and not even know it.

“There’s so many people that need services cause they’re aware now,” one of the organizers with the ALS Association told Kawakami during Friday’s meeting. “Currently there are four families on the island that are affected, but others in the community could be not yet diagnosed.”

Ornellas took the opportunity to address a more practical concern. He asked the mayor if there was anything he could do to fix the sidewalks on Ahukini Drive in Lihue. Because there is no smooth transition between the concrete and the dirt, Ornellas said he has to drive his scooter in traffic to get to the store.

“I have to go in the road cause it’s not accessible,” he said.

Kawakami couldn’t make any promises, but called Ornellas’ suggestion, along with other requests he has heard from Kauai residents asking for infrastructure upgrades to make the island more accessible, “a worthwhile investment” and guaranteed that his staff would take a look at it.

Already Ornellas has outlived his life expectancy and hopes he can still hang on for years to come. He remains positive but admits that it has been a struggle to cope with the progressive loss of mobility.

When asked whether it scares him to know that it’s only a matter of time until the disease destroys enough of his nerve cells to kill him, Ornellas said, “A little bit. I think not being able to go anywhere is what scares me the most.”

For now at least, ALS hasn’t taken that from him. In spite of everything, Ornellas is quick to smile and his positive attitude is contagious.

“I go everywhere,” Ornellas told Kawakami. “I’m all around Lihue.”

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