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The Honolulu Advertiser
Posted on: Tuesday, December 24, 2002

When it's your child ...

By Lee Cataluna
Advertiser Columnist

How far would you go to save your child's life? Most parents would say they'd do anything, go through anything. Most parents will never have to go through what Kristina Sipenuk has done to try to save her little girl.

Kristina left her husband and four of their eight children behind in Micronesia and traveled to Hawai'i in search of a cure for her 8-year-old daughter, Kercy Engichy.

Kercy had been having seizures and was getting progressively disabled. Kristina also brought along three of Kercy's siblings, ages 4, 11 and 17. They came with hope, and little else; no job, no place to stay, no knowledge of how the city or the system works, and very little English.

With nowhere else to turn, the family ended up at the Institute for Human Services Women and Families' Shelter in August.

Kercy was able to walk when she arrived at the homeless shelter. In a few months, she couldn't walk and she stopped talking. "She would kind of talk a little and laugh a little, but not anymore," said Dayna Mortensen, clinical supervisor at IHS. "But if you look at her and you smile at her, she smiles back. You tell her Santa's coming and she kind of nods her head."

Kercy started medical treatment at Kapi'olani Medical Center. In late October, the family got the worst possible news: Kercy's condition is very rare and there is no cure. Though doctors were able to give her condition a name — metabolic encephalopathy — they won't venture a guess as to how much time she has left.

And the bad news came without a translator. "The older sister had to translate for her mother," said Mortensen. "She had to tell her mother that her sister was terminal."

As Kercy lost mobility, the family turned to Shriners Hospital for Children for a wheelchair. Shriners was able to help, but while they're waiting for a wheelchair to arrive, the family is pushing the tall 8-year-old in a baby's umbrella stroller. "It's hard for everyone here," said IHS Executive Director Lynn Maunakea. "But to be homeless with this child, it was a very critical situation."

The IHS staff contacted as many agencies as they could think of asking for help in finding housing for a family with a critically ill child. They also asked for help in counseling and bereavement care.

Then, fate stepped in. The Hawai'i Housing Authority found a three-bedroom apartment for the family in Halawa Housing. It's a walk-up, which is difficult with Kercy in a stroller, but the family was willing to carry her up and down to doctors appointments. Anything to make her more comfortable.

Kristina and her children moved into the apartment over weekend with the help of Pacific Gateway, a service provider for immigrants.

Now that the family has a place to stay, IHS staff can close their case file, although they know the family is going to need more help as Kercy's condition deteriorates.

"This is one family that I've said, 'Just call me anytime,' " said Mortensen.

Lee Cataluna's column runs Tuesdays, Fridays and Sundays. Reach her at 535-8172 or lcataluna@honoluluadvertiser.com.