Organ recipients to meet
By Helen Altonn
Star-BulletinRaelyn Naleieha, 10, of Honolulu swims runs and rides her bike. In Hilo, Ka Leo Kaapana, 9, rides her bike and does arts and crafts.
This may not sound unusual for kids their age. But the two wouldn't be running or playing if not for organ transplants.
They will meet for the first time in Washington, D.C., at a special event bringing children together from across the nation who received the "gift of life" from organ donors.
Children ages 2 to 10 were selected in every state as delegates to the First Family Pledge Congress sponsored by the American Society of Transplant Surgeons on April 14.
The children will honor congressional members who have committed to help address a national crisis caused by a shortage of organ donors.
About 236 Hawaii residents were waiting for organ transplants in January. Some have been on the list for years.
Raelyn had a small bowel transplant in June 1997 because of "short gut syndrome" resulting from removal of most of her small abnormal intestine at birth. She had waited three years for a transplant.
Ka Leo was born with a kidney disorder and waited two years for a new one. She had a kidney transplant in September 1997.
Aileen Waiau, Raelyn's foster mother who will accompany the child to Washington, said she's "doing pretty good. She's growing and gaining weight."
She's learning to play tennis and basketball in addition to her other activities. "That doesn't mean she's great at it but she's out there trying," Waiau said.
She said Raelyn must take a lot of medications but nothing compared with what she used to need. "She doesn't get hooked up to machines - none of that."
Before the transplant, she had to wear a 5-pound backpack with a pump drip-feeding nutrition into her stomach. She also had to be fed intravenously through a large catheter in her chest for more than 10 hours a night four nights a week.
Waiau said Raelyn is very excited about the trip to the Capitol "because she knows this is a chance to say thank you to organ donors. Without them, her wishes wouldn't have come true."
Ka Leo and her sister, Keaulii, have lived with their maternal grandparents, Pam and Manny Kaapana, since the death of their mother about five years ago. Ka Leo calls them "Amma" and "Papa."
The entire family is going to Washington, and Pam Kaapana's niece, who works for Sen. Daniel Inouye, is lining up places for them to go.
Kaapana said Ka Leo has been doing well physically since the transplant, although the medications have caused some problems.
She also cited difficulties getting adequate tutoring for the child on the Big Island. "I tried very had to get her education . . . I finally got three hours a week (tutoring)," Kaapana said.
"This year I had meetings at school and demanded they get her up to par because she's very unhappy. She kept telling me 'I'm so stupid.' "
She finally got Ka Leo into a special education class in school with individual help, Kaapana said. Her son also gave them a computer with programs Ka Leo can do at home.
Now she's "doing real well," Kaapana said. "It's a real good feeling."
