DENNIS ODA / DODA@STARBULLETIN.COM Jason and Kaui Rezentes play with their 21-month-old daughter, Ava, who has spinal muscular atrophy. Ava cannot move at all except for facial expressions and needs a machine to help her breath. Kaui Rezentes had to quit her job to take care of Ava, forcing the family to look for another home with lower mortgage payments.

All for Ava

An Ewa Beach couple focuses on
their fragile daughter, giving up
dreams of financial stability

FOR A WHILE, life was simple: Jason and Kaui Rezentes were celebrating the birth of their first child, Ava, and settling into their new Ewa Beach home.

They had a little savings tucked away to get them through Kaui's maternity leave and were even able to splurge and buy a second car.

But everything changed the day after Christmas 2003. At just 5 months old, Ava was diagnosed with spinal muscular atrophy, a terminal genetic condition that leaves children in constant need of care.

Nine days later, on the day Kaui returned to work as an optician after her maternity leave, little Ava stopped breathing.

The infant stayed in the hospital for seven months, and Kaui quit her job, finding Ava's care a 24-hour occupation that could not be thrust on in-home nurses.

Minus one household income, Jason Rezentes has had to do double duty.

He works seven days -- and as many as 60 hours -- a week. Weekday mornings he's a radio disc jockey, and afternoons and weekends an emcee and lighting specialist for private parties and weddings.

The Rezenteses consider themselves an example of how significant emergencies -- medical or otherwise -- can spell real disaster for a family's finances in Hawaii's high-priced housing market. With little wiggle room on their mortgage and other household expenses before Ava's diagnosis, they are now finding it a monthly struggle to meet payments.

They took on a $2,000 monthly mortgage in 2002 for their $309,000 home, which they could afford when they were both working.

But now, they've nearly depleted their savings and are being forced to make some tough choices. Jason says he'll sell the family's second car, an Acura MDX, because the payments are too high.

And the couple has resolved to move into a smaller home, where the mortgage payment will likely be more manageable.

"It's still going to be a struggle," said Jason, just home from a morning job on a recent Saturday.

"At this point," Kaui adds, "we stretch every month."

DENNIS ODA / DODA@STARBULLETIN.COM Jason Rezentes interacts with his daughter, Ava, 21 months. He and wife, Kaui, exercise Ava's legs and arms daily since she is unable to move due to spinal muscular atrophy. Ava also is fed through a tube inserted in her belly.

Nearby, Ava, now 21 months old, watches "Sesame Street."

Her fragile, thin body -- surrounded by stuffed animals -- lies on a special bed the couple has fashioned for her on the sofa, straight enough for her weak limbs. A machine stationed at her head helps her breathe, and another at her side monitors her pulse.

From time to time, either Jason or Kaui suctions saliva from Ava's lips and mouth. She's unable to swallow, and the liquid buildup could choke her.

Those with the most severe form of spinal muscular atrophy, like Ava, usually do not live past their second birthday.

Ava has already held on longer than doctors thought possible, thanks to the Rezenteses' persistence. They brought in specialists from New Jersey to examine their daughter and were able to track down special equipment aimed at keeping her airways clear.

Her medical care has not been cheap.

Insurance covers most of it but not everything. And a special $4,000 stroller, along with other equipment, will likely be at least partially paid for out of pocket.

"We take it day by day," Jason said as he sat at Ava's feet on the sofa, tickling her stomach for a smile. "You want to try and live a normal life."

At that, he turned his attention back to Ava, took her dainty hands -- with nails painted magenta from a recent party with cousins and friends -- and covered them with kisses.

Tonight on KITV 4 News at 10 ...

All this week on KITV4 News at 10, we've asked our viewers to share their experiences in the Hawaii housing market. From financial crisis to cashing in, we've heard a lot of amazing stories. Tonight, Paul Udell will share some of the e-mails we've received about the housing crisis.