Living Beyond All Expectations
She was supposed to survive just two years, but the daughter of radio personality Pipi is now 6, and living proof of the power of love
On-air, Jason Rezentes is known as Pipi, the energetic, funny radio personality on KCCN-FM100.
Off-air, he and wife Kaui are the loving, dedicated parents of an adorable 6-year-old girl, Ava-Isabel, who at 5 months old was diagnosed with type 1 spinal muscular atrophy.
Because of her condition, little Ava is unable to swallow or move, except for making facial expressions. She also is on a special ventilator 24 hours a day that helps her to breathe.
“When she was diagnosed, we did research on it and found out that most kids don’t live past the age of 2,” recalls Kaui. “And there were just a lot of grim statistics, and even the neurologist told us that it’s not a good sign.”
Many would call it a miracle that Ava is still alive. But anyone who knows the Rezentes ohana will say it’s love.
“Her being here tells me that her life is indefinite,” says Kaui. “Every day is a blessing and we just take it as it comes.”
“We’ve learned that prayers work and to never give up,” adds Pipi. “You have to strive for what you want. We didn’t want her in the hospital, we wanted her to come home and she came home. We wanted to be able to manage her care and we’re managing.”
For Ava, they will do anything. From the very beginning, they wanted only the best for their baby, including a non-invasive ventilation system and cough machine (versus a tracheotomy), that they learned about from families on the Mainland with children with Type 1 SMA. The problem was that no hospital in Hawaii had that equipment and no doctors were familiar with it.
After months of going back and forth with local doctors and hospitals, the Rezentes family decided the only thing left for them to do was to Life Flight Ava to New Jersey to get the treatment they felt she needed.
The arrangements were all made, but then just a few days before they were scheduled to leave, there was a change in plans.
“We got a call (from New Jersey) and they said it’s a lot of stress on the patient for them to fly up here, so what if we can get a team together and come there?” explains Kaui. “So they ended up flying a team down here, with all the machines, and they spent a week at Kapiolani teaching the staff.”
The pair say they’ve been fortunate that their medical insurance has covered enough of what they needed. However, it hasn’t been easy.
Kaui was forced to quit her job as an optician to take care of Ava, and Pipi was working on and off at the radio station.
Eventually Pipi went back on the air full time and even worked extra hours as an emcee and lighting specialist at private events.
They also have had to make some sacrifices, such as moving from a two-story house to a single-story home.
And not everything is covered by insurance, such as the breast milk needed for Ava’s diet, which is Fed Ex’d overnight from Mother’s Milk Bank in San Jose along with a monthly bill of about $700.
The family held a fundraiser a few years ago to help with the added expenses and are finding themselves in need of help again.
“We hate to do a second fundraiser, everyone’s having a hard time,” says Pipi. “We’ve been trying to hold off on doing it, but we need to rebuild her room and the bathroom to be more accessible. She’s outgrown the tub, and we have a bath chair for her, but you can’t even get it through the door. And we need a new stroller/wheelchair.”
Today, Ava is a first-grader at Pohakea Elementary School in Ewa Beach. She’s learning to count and she loves to read.
And with Ava in school, Kaui is able to work again. She now works for Hilopa’a Family to Family Health Information Center, where she’s working on a grant project.
Pipi continues to work at KCCNFM100, but he’s on prime time now with a show in the evenings from 6 p.m. to midnight.
The couple also volunteers with different organizations. Kaui is on the Western States Genetics Services Collaborative, the Special Education Advisory Council and the Disaster Preparedness Advisory Council.
Pipi serves as co-host of the Muscular Dystrophy Association telethon every year and helps out at various MDA events.
This past summer Ava attended her first MDA summer camp at the YMCA Camp Erdman. “She loved it,” says Kaui.
The MDA’s next event is Lucky We Live Hawaii, happening at 5:30 p.m. Nov. 20 at the Hilton Waikiki Prince Kuhio Hotel. Guests are invited to participate in a trivia game show testing their knowledge of Hawaii. Tickets cost $100. For more information, call 593-4454.
As for Ava’s future, mom and dad say it’s going to be a challenge but they’re looking forward to everything.
“She’s been through a lot. I don’t know how she does it,” says Kaui. “This is pretty much what it will be like forever unless a cure is found. The only change we would ever make eventually is she may not be able to sustain on the ventilator like this. As she gets weaker, we may have to do a trache.
“This is the definite picture of unconditional love because we just love her so much.”
“Right now, we’re just trying to get through this cold,” adds Pipi. (During MidWeek‘s visit to the Rezentes’ Ewa Beach home last week, Ava was battling a cold.)
“When she’s well, she’s talking and she’s happy,” says Pipi. “She loves to watch her cartoons and she loves music. We took her to the KCCN Birthday Bash the last two years. There’s just constant love around her and that’s what keeps her going.”
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