Temperatures in Hilo edged toward 85 degrees on a recent Friday, but inside the small ohana unit attached to Jonathan and Malia Miyasato’s home, it was some 20 degrees cooler. ADVERTISING Temperatures in Hilo edged toward 85 degrees on a
Temperatures in Hilo edged toward 85 degrees on a recent Friday, but inside the small ohana unit attached to Jonathan and Malia Miyasato’s home, it was some 20 degrees cooler.
A small air-conditioning unit hummed.
The unit was installed last month, part of the most recent gift of A Dream Come True, the nonprofit organization that grants dreams to chronically or critically ill children on the Big Island. The organization recently celebrated its 30th anniversary.
There was a tall red cabinet beneath the air-conditioning unit, which housed medication for Gary Marks, 16. That, too, was a gift from A Dream Come True, as was the DVD of “The Muppets” that was playing on a television above Gary’s bed.
Two years ago, Gary was formally diagnosed with Hunter syndrome, a rare inherited degenerative condition that in turn causes a multitude of other medical concerns, including delayed development, an enlarged head, joint stiffness and thickening of tissues in the heart and trachea.
Gary began having respiratory problems in 2013, and had to stop attending school in 2014 following a tracheotomy. His Waiakea High School ID still hangs on a ring of keys in the house.
Today, genetic testing for Hunter syndrome can be done during prenatal screenings, but that did not exist when Gary’s parents, Christian and Naomi Marks, first learned they would be having a baby. It still took years to get a firm diagnosis, Naomi Marks said.
The Marks family (along with their dog, Goozers) have lived in the Miyasato ohana home for the past few years. Jonathan Miyasato taught severely disabled students at Waiakea Intermediate School until his retirement, and had Gary as a student. At the time, Gary was mobile and able to do “a whole lot more,” Miyasato said.
When Christian and Naomi Marks contacted Miyasato a few years ago looking for a place to stay, the ohana home just made sense.
“We had the room,” Miyasato said. “We just love Gary so much. It’s been a blessing having him here.”
It was Malia Miyasato who first told the Markses about A Dream Come True. When the family sent off the application, they were thinking of last summer when temperatures pushed into record-setting territory, and the small studio apartment was stifling for all, but especially Gary, who has trouble regulating his body temperature.
“Last summer … we had a portable (air conditioner), but it broke,” Naomi Marks said. “No one in Hilo or Kona had them (anymore).”
The Markses also had recently received the gift of a lift van, designed with a ramp to allow wheelchair access, from Naomi’s parents. But the van was in need of mechanical work. That work, too, was added as a request to the A Dream Come True application.
Applications must have a physician’s signature and be approved by the A Dream Come True Committee. Funding for the charity is approved by the deacon board of Heritage Christian Fellowship, which is the program sponsor.
“We had to educate ourselves about what is Hunter syndrome,” said committee member Susan Segawa. “It’s pretty critical.”
This past August, Gary had a stroke and had to be transported to Kapiolani Medical Center for Women and Children in Honolulu. The family was on Oahu for two months. They watched a lot of “The Muppets” on TV, Christian Marks said.
Now, they can watch from the comfort of home — a home made more comfortable by one donated air conditioner.
For more information about A Dream Come True, email Susan Segawa at adct.bigisland@gmail.com.
Email Ivy Ashe at iashe@hawaiitribune-herald.com.
