Sunday, December 21, 2014

BY LESLIE HARRIS O'HANLON | SPECIAL TO WEST HAWAII TODAY

Most parents hope their children are healthy, strong and able. But for two Parker Ranch families, there came a moment when they knew something was amiss with their children.

For Nahua Guilloz, that moment was about a year ago when her daughter, Jessica, caught a cold.

"She started feeling tired and cold all of the time, and she never seemed to bounce back," said Guilloz, a corporate secretary at Parker Ranch.

Jessica, normally outdoorsy and active, looked pale and worn out. Then she began falling at school, and her friends had to carry her to class.

For Tracie (Kawe) Akana, her moment came when her husband, Blaine Hoopai, a Parker Ranch cowboy, pulled up behind their young son, Cheyenne, on a roaring four-wheeler.

"Cheyenne didn't hear him or turn around until my husband touched him," Akana said.

Both sets of parents sprang into action to find out what was going on with their children. In April, 11-year-old Jessica was diagnosed with Fanconi anemia, a rare, inherited blood disorder that leads to bone marrow failure. One treatment strategy for the disease is a bone marrow transplant. Jessica received her transplant in mid-September at Kapiolani Medical Center on Oahu, where she remains.

Cheyenne, a lively 4-year-old, was diagnosed as being deaf last December. Before receiving an official diagnosis, Cheyenne's mom thought her son was speech delayed because the condition runs in her family. Cheyenne's speech is similar to that of an 18-month-old.

"I kind of had a feeling something was wrong, but when it was confirmed, I was in shock for about a week," Akana said. "It was heartbreaking to find out. But by standing by each other, my husband and I came to our senses and decided we had to do everything we could to find the best doctor to help us."

Cheyenne received help from an audiologist at Kapiolani Medical Center. Cheyenne's doctor decided a cochlear implant would be the best treatment. A cochlear implant is a small electronic device that provides a sense of sound to a person who is deaf or severely hard-of-hearing.

Cheyenne will undergo surgery in mid-November. Even after he receives the implant, the road to better hearing and speech could be long.

"With the implant, he will be able to hear, but he will have to start speech all over again," Akana said. "It's like teaching a baby to talk."

As for Jessica, her body is rejecting the donor marrow, and she can't hold down any food or medicine.

"It's scary, but we have our faith in Jesus. We have people praying for us all around the country," Guilloz said. "It is prayer and faith in God that is helping us through. I would be an absolute wreck if I didn't have people praying for me."

Both families also have the support of fellow Parker Ranch employees, who are hosting a steak fundraiser to raise money to help cover extra costs.

Sandy Long, an administrative assistant at Parker Ranch, and two of her colleagues decided to conduct the fundraiser after visiting Jessica in the hospital.

"When we left there, we felt helpless. There was this 11-year-old child fighting for her life, and we couldn't do anything," Long said. "When we got to the parking lot, we were wrecks. We said 'How can we help? What can we do?'"

When they learned about Cheyenne, they included his family, too.

Despite what Jessica is going through, on most days she is upbeat.

"She's sad, and she's done with being in the hospital," Guilloz said. "But, on average, she has a good attitude and her spirits are really good."

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Comments

fdick96740's picture
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We saw the table at WallMart and while we have no need for the Steaks, putting some $$ in the jar conveniently loacated on the table was an easy and pleasant task. Best of luck! aloha

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