Ohana Will Rally Sept. 15 For Windward Tot
At age 3, Kelci Marie Nanimakamai Shigeta has struggled with more health problems than anyone should expect in a lifetime. The worst one to hit the little Maunawili tot last year was a rare, still-unconfirmed form of mitochondrial disease.
“Only about six kids have it on Oahu,” said Kelci’s mother, Kelli Shigeta, of her only child. “And because it’s so hard to officially diagnose, insurance won’t pay for the medications.” Her illness has left her unable to walk, talk or sit without assistance, and Shigeta said there are no doctors in Hawaii who treat it.
The couple’s friends and the Nakaoka/Shigeta ohana are hoping a white elephant sale from 8 a.m. to 2 p.m. Sept. 15 can relieve some of the financial burden as they struggle to keep her comfortable and minimize her hospital stays. Called Kokua Kelci, the event is set for Ben Parker Elementary School, complete with entertainment by Kasey Kitano at 9 a.m., Kapena at 11 a.m., Boogie Scott at 12:30 p.m. and HEA Dance at 1:30 p.m.
The little girl, weighing only 35 pounds, has been in and out of the hospital for months, as her body seems to have declared war on her kidney and brain functions. “We knew she was developmentally delayed, but she could feed herself,” explained Shigeta, who was in retail sales before quitting to stay home and care for her full time. “It’s nothing we ever expected from age 1. She used to move on her own, but now she can’t even hold her head up.”
So far, Kelci has been diagnosed with focal segmental glomerulonephritis, proteinuria, cerebral and cerebellar atrophy, dysphasia, hypotonia and ataxia. She’s been seen by eight specialists. She requires a customized stroller and wheelchair, since she can no longer sit up — her father’s HMSA pays for one, not both — plus mucus suction kits and a chest therapy machine. Steroids and chemotherapy are also in the mix of medical weapons. Because of her autoimmune condition from chemotherapy, Kelci cannot lie in the sun or be around germs. This make homeschooling a given as well.
“It’s kind of a lot for a little child, being poked every day to draw blood, feeding through a G-tube (gastrostomy) … She was a happy, smiling child before. ”
They are hoping that an October visit to Hawaii by a Stanford geneticist, who comes here every two years, will help them deal with their daughter’s mitochondrial disorder. “There’s not much I know about it, except that it’s really rare,” Shigeta said, “and the mother may be the carrier for it.”
A fund also is being set up at Bank of Hawaii for “Kokua Kelci,” and donations of items for the sale also are welcome at firstname.lastname@example.org.
A website also is in the works at kokuakelci.com.