Make-A-Wish Foundation fulfills Hawaiian dream

— Mackenzie Austin, who turns 13 on Thanksgiving, was born with a rare genetic disorder that has resulted in Stage 4 kidney and liver disease.

WINTER GARDEN — After learning their infant daughter had a rare genetic disorder that results in kidney failure and liver abnormalities, Mackenzie Austin’s parents were prepared to say good-bye almost as soon as she was born almost 13 years ago.

But she proved everyone wrong, and the Winter Garden girl officially will become a teenager on Thanksgiving Day.

A seventh-grader at Lakeview Middle School, Mackenzie was born with autosomal recessive polycystic kidney disease and congenital hepatic fibrosis. And, although she has Stage 4 kidney and liver disease and needs a transplant — she doesn’t see herself as different.

“I have to watch a few things, but I think I’m like every other kid,” she said. “I go to the doctor, but I do normal stuff just like every other kid.”

This summer, Mackenzie, her 11-year-old brother, Curtis, and their parents, Mark and Tracy Austin, spent a week on Hawaii’s island of Oahu through Make-A-Wish and Watertree Health.

EXPERIENCE OF A LIFETIME

Prior to the trip, Shannon Bowerson, a volunteer wish grantor, met with the Austins and asked Mackenzie about her favorite animals, colors, songs and other likes, and then the weeklong June trip was planned around her answers.

She fed eucalyptus to a giraffe and took its blood pressure; took eco-tours around the Hawaiian island of Oahu; went to Pearl Harbor and visited the USS Arizona Memorial, USS Missouri Battleship and Pacific Aviation Museum; met and received an autograph from World War II veteran Herb Weatherwax and learned he survived the bombing of Pearl Harbor because he had taken his mother to church; played on the beach and went canoeing in the ocean; and spent an entire week on a real vacation with her family.

“It was absolutely amazing,” Tracy Austin said. “It was an experience of a lifetime. Over the last 11 years, our family vacations have been visiting hospitals and the National Institute of Health in Bethesda, Maryland.”

In preparation for the trip and all of the U.S. history they would be exposed to, Mackenzie and Curtis read books about Pearl Harbor and World War II and talked about the stories and the people in them.

One of her favorite memories, she said, took place on the first day of their trip.

“We went to the top floor of the hotel, and we ate lunch there, and we were sitting right there eating pineapple, and then all of a sudden, a rainbow came out — right over Diamondhead,” she said.

The Austins made sure to take photos to document all of the activities on their trip. Many of the photos have an extra face in them, too; because Mackenzie’s baby sister, Josephine, didn’t go on the trip, the family laminated a photo of her and held it up so “Flat Joey” would be included.

STRONG LITTLE GIRL

Tracy Austin said her daughter’s experience with ARPKD/CHF is rare.

“Most children don’t make it out of utero,” she said. “When she was born, the doctors gave her 24 hours to live.”

Mackenzie’s illness is managed with multiple medicines and a strict diet. She has pain, high blood pressure and bleeding of the esophagus and stomach. She has thyroid and gastrointestinal issues, as well as growth issues.

Austin is proud of her girl.

“The week in Hawaii not only gave Mac a week to enjoy and forget about everything that happens on the mainland, but it built her confidence, she gained self-esteem, and I think she finally realized that she should and could be proud of who she is, what she has gone through, overcome, and what she can achieve,” she said. “It is hard trying to grow up and fit in — and even harder trying to stay alive, grow up and fit in sometimes. Most people look at Mackenzie and never think that she is that sick; but knowing what is happening inside her little body, you would question how she is still alive.”

She is grateful, too, for her son’s understanding.

“He also has gone through a lot with this disease, from being separated for long periods of time from his sister, as well as his mom and dad while she was in the hospital, to being bounced around from friends and family taking care of him so we could be with Mac,” Austin said. “Seeing them interact, to be best friends, experience and explore somewhere new and so beautiful was so heartwarming.”

Contact Amy Quesinberry Rhode at [email protected].