Teen with rare disease is fearless in face of life

School has barely started, and Kaipo Manners already has his graduation party planned. There will be Hawaiian fire dancers, lei girls and a second cousin of NFL linebacker Junior Seau.

To put it lightly, graduation is a big deal for the Hawaiian-American teen.

Kaipo’s backup plan is sobering. His eulogy will be delivered by his father and closest friend, Daniel Manners III. His Spokane Valley friends will tip bottles of Coke to toast Kaipo’s hard life. His ashes will be mixed in concrete, flown from Spokane to the Island State, and deposited in a coral reef. Kaipo suffers from a terminal illness so rare doctors have suggested naming it after him.

“Until I die, I’ll live the life I have,” the 17-year-old said recently. “I guess that’s all anyone can do.”

Benign tumors attacking his brain stem and vital organs are slowly killing him.

Thirteen months ago, doctors gave the teen less than a year to live if he didn’t seek aggressive treatment. He had been hospitalized for several days. X-rays indicated he was losing his ability to drink without sucking fluid into his lungs. He would likely choke to death.

Doctors suggested flying him to a Boston hospital for another round of experimental treatments, the kind Kaipo had endured his entire life and never balked at. They talked more to Kaipo’s parents than Kaipo. And while they spoke in a vocabulary more Latin than English about hemangiomas, intubations and arterial venous malformations, Kaipo prayed.

Then, to everyone’s surprise, the teen said “no thanks.” He ordered the half-dozen doctors out of the room and told his startled parents how things were going to be.

“I don’t want to freak you out about what I’m going to say, or think I’m trying to be super spiritual, but God has done more for me than any doctors I’ve ever seen in these 16 years,” Kaipo said. “I’m tired of going through this and seeing you guys go through this for nothing. I would rather live my life to the fullest as I am now, even if I die tomorrow.”

His parents, father, Daniel, and mother, Cleala Kiszer, challenged his reasoning from every angle, but eventually gave in. They knew he meant business. He had never said no before.

“It was like Kaipo just came of age at that moment,” Kiszer said. “He has no fear of it. He said, ‘I’m not going to go through this anymore. I’d rather live like this even if for just one day than go through more of that.’ “

Kiszer drove her son home from the Shriners Hospital for Children awestruck by what he’d done, but proud. He is her oldest child, named after his father but tagged at an early age with the Hawaiian name for male sweetheart, her sweetheart, Kaipo. Quietly, she thanked God for the honor of being Kaipo’s mother and questioned whether she deserved it.

Later at church, as the pastor talked about heaven, Kaipo turned to his mother and whispers, “I mean it, Mom. If I die I don’t want to come back.”

A year has gone by since that quiet drive home from the hospital, since the stern reminder during Sunday service. On the first day of a senior year Kaipo was never supposed to see, he is guiding his motorized wheelchair through the crowded halls of University High School. Students pour around him as if he were a boulder in a stream of humanity. Seated, he barely rises to the midsection of the kids around him. He looks for a classroom, but only sees rising waves of shoulders capped by every shade of hair imaginable.

Many of these students know Kaipo. He has been with them since moving from Las Vegas to Spokane Valley in second grade to be closer to Shriners Hospital for Children. He has worked hard to be “ordinary,” so much that he earned a Chase Youth Award for personal achievement as a fifth-grader at Keystone Elementary. Even then, Kaipo couldn’t walk. His disability couldn’t even keep him out a game of playground tag. His teachers likened him to a Pied Piper, the way he drew other children in.

“We’ve always hung out with each other, always talked on the phone,” said Nathan Radecki, also 17. “The way he acts is really different than anybody else because he stays really calm in any situation. Really, it seems to me that you can rely on him for anything.”

Kaipo eyes the classroom clock with everybody else, waiting for the bell to ring, still screws around in study hall. He still makes plans for an adult life.

“I plan to study architecture at Washington State University,” Kaipo said. The clock is ticking on his life, but at the moment the pendulum has swung in his favor. Kaipo has gained 20 pounds since doctors last declared his days numbered. His father now pauses for strength in midlift when picking up his son.

Kaipo has been declared ineligible for hospice, a care and counseling program designed to prepare people for dying during the last six months of their lives. If nothing more, he has taught doctors they know as little about when his life might end as they do about the condition that threatens him.

“The rarity of Kaipo’s condition is one in I don’t know how many millions,” said Dr. Kennard Kapstafer. “I’ve seen only one other case like it in 43 years.”

So little is known about the cause of Kaipo’s illness that it doesn’t have a name. Doctors refer to it simply by the type of tumor attacking Kaipo’s body, arterial venous malformations, AVMs for short. The tumors are noncancerous. On Kaipo’s skin, they form blood-rich, raised purple growths. Inside the teen’s body, the tumors cluster at the very centers controlling movement, breathing and facial muscle control.

His brain stem is covered with AVMs. The pressures the tumors apply on his nervous system paralyze the right side of his face, making his right eye useless. His spine is crooked from poor development caused by the tumors. The communication lines connecting his legs and brain were severed more than 10 years ago. He hasn’t walked since. Now the growths are affecting Kaipo’s lungs and heart.

Kaipo no longer has use of his diaphragm. It’s all he can do to force enough air past his vocal cords to make sound. His voice never rises above a whisper.

The cost of Kaipo’s medical treatment is well over $1 million, said his stepmother, Laura Manners. Many of those costs are paid by Premera Blue Cross, which Daniel Manners receives through his job as a meter reader for Avista Corp. A smaller portion is picked up by the state of Washington. The family has to be careful that Daniel doesn’t make too much money, or they will become ineligible for state medical assistance, which makes a five-figure contribution to the family’s medical bills.

It is how his family copes with his condition that Kaipo worries about most. Daniel and Laura have two other children, 9-year-old Kalani, Kaipo’s brother, and 7-year-old Kiana, his sister. Cleala Kiszer also has a daughter, Kylee, almost 9. Kaipo splits his time between the two households.

“What concerns me is how my brother is going to take it and how my dad is going to take it when I die,” Kaipo said.

Kalani insisted on sleeping with his brother, once he realized Kaipo’s life would be short. And Daniel feels a special bond with his son that makes them more like brothers than father and son, according to Laura.

It was Daniel who stayed with Kaipo, the night before the then 6-year-old boy would be put in a body cast in an attempt to save Kaipo’s ability to walk. The cast was being put on in Los Angeles. The father and son checked into a hotel and Kaipo, running on nervous energy, proceeded to wear a path in the carpet until his father ordered him to stop. The boy never walked again. His father wishes he would have let Kaipo run all night.

Daniel has immersed his children in Hawaiian tradition, even though his kids were born in the continental United States. Regularly the family gathers around a stereo to listen to Hawaiian ballads about their ancestors and the way the islands use to be before tourism and statehood.

The songs fill them with what Kaipo calls “ohana,” a Hawaiian word that means family, but describes a deeper belonging. It makes them cry for a place Kaipo has only seen four times in his life, but colors his existence like a deep dye. It is the homeland they never tire of thinking about, the family they can never love enough, a part of them for which there is no substitute. This is what he will become after he is gone, a part of ohana.

Heaven. Kaipo thinks about the afterlife and he cannot believe it is only streets paved with gold and a place where no one gets sick. There has to be more.

“That sounds like something Miss America wants to see,” Kaipo said. “Coming from my point of view, does heaven have a roller coaster and Playstation II’s? The fact that the streets are made of gold means there’s no need for anything. That would be cool for a while, but can you get tired of it? Even on vacation when you first get there it’s great, but then you get tired.

“When you get to heaven,” Kaipo said, “it must be like you just got there all the time.”