KAILUA-KONA — Audrey Yedinak had never flown on a plane before. Her doctors weren’t sure she should, or even if she could.
But when the 9-year-old from Tehachapi, California, found out in April about an opportunity to fulfill her dreams of swimming with dolphins and visiting a volcano on Hawaii Island, her reaction was as uncomplicated as it was matter-of-fact.
“I should go there,” Audrey said of her thoughts when her mother told her the news.
Audrey is, in many ways, what you’d expect a little girl to be. She’s a dancer. A “prima ballerina,” as she described it. She loves animals, most of all Sandy the pug, who’s waiting for her back home. Her favorite color is pink.
But Audrey also bears a heavy burden. It’s one she’s carried with her almost all her life, not unlike the 20-pound backpack constantly strapped around her shoulders, loaded with an array of lifesaving medical supplies.
Audrey suffers from mitochondrial disease — a rare and scarcely understood condition that occurs when mitochondria, which exist in most cells in the body and produce 90 percent of the necessary energy for a person to live and function, fail.
The impact of mitochondrial disease is extreme, and affects Audrey’s entire body. She gets nourishment through a feeding tube. She’s a diabetic. She’s on the autism spectrum. And that’s only part of it.
“It’s a disease that as you get older, it just gets worse,” said Elsa Yedinak, Audrey’s mother and a registered nurse who left her job to care for her daughter full-time. “So (throughout) her life, as long as she’s able to do something, we’ve tried to live as much as we can.
“It’s important to us to live life with her.”
Only about 10 percent of children with mitochondrial disease ever live to see their 18th birthdays. But that doesn’t scare Audrey. She’s spent several days this year in the hospital, but what bothers her most about that is missing out on dance class.
“I think she doesn’t really look so much at the future, she’s very much in the moment,” Elsa said. “We stop, she picks up flowers, she notices lizards — that’s the kind of person she is.”
A handful of Hawaii Island businesses have come together to help the Yedinak family do just that, to live in the moment — moments they may have never been able to live in otherwise.
It started with Shay and Aaron Boyd, owners of Mana Kai Luxury Vacations, who came across Audrey’s story from a friend of a friend by way of Facebook. Shay said she was inspired the minute she heard it.
“This little girl is just remarkable,” she said.
The Boyds offered the family airfare and a week-long stay in one of their luxury properties on Kohala Ranch. The couple would also like to start some kind of fundraiser for the family moving forward, Shay said.
“We were just very blessed to be a part of this and be able to give this time to her at this home,” she added.
Dolphin Quest at the Hilton Waikoloa Village will provide Audrey with an exclusive 15-minute session to swim with a dolphin and its trainer today.
Yvonne Khouri-Morgan, of Mauna Lani Realty, also chipped in Wednesday by presenting Elsa and Jacob with tickets to join Audrey on the dolphin excursion.
The tickets were presented just a few minutes before the family headed to the Fairmont Orchid, which sponsored a private outrigger tour as well as a mermaid manicure for Audrey on Wednesday, her 9th birthday.
The Yedinaks finished up their time at the Orchid with a special birthday dinner at Brown’s Beach House.
“We’re honored that Audrey chose to spend her special day with us,” said Kelley Cosgrove, general manager at the Fairmont Orchid. “It’s our great hope that Audrey and her family experience the true spirit of aloha on Hawaii Island and create memories they’ll always treasure.”
Nice Story whish our island could have done more for her.