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The Honolulu Advertiser

Posted on: Wednesday, November 3, 2004

Help from Easter Seals merits some in return

By Eloise Aguiar
Advertiser Staff Writer

Soon after arriving in Hawai'i at the age of 9 months, baby Camilla showed signs of latent development.

Billie Gabriel, left, vice president of development for Easter Seals, accepts a new Ford van from Eileen Dervisevic. Dervisevic donated the van to thank the organization for the support and guidance shown to her daughter, Camilla, who may have mosaic Down syndrome.

Deborah Booker • The Honolulu Advertiser

Her doctor couldn't tell her parents what caused the problem despite numerous tests and visits to specialists.

For Eileen and Ed Dervisevic, not knowing was the worst part of a five-year search to identify their child's condition and take steps to help her. But the California transplants found support and treatment for their baby through Easter Seals Hawai'i. Now they are making some repayment to the nonprofit group.

"In the beginning you feel so really alone and helpless," Eileen Dervisevic said. "You have concerns about what your child will be able to accomplish and how much help they'll need."

The doctors dealt in generalities and wouldn't predict what to expect, Dervisevic said, adding that at one time Camilla was diagnosed as retarded with an IQ of 50. But two years later, after intensive training with Easter Seals, her IQ was 65.

Camilla Dervisevic
Camilla attended the Sultan School Early Intervention Program from when she was 18 months to 3 years old, when she qualified for Department of Education preschool program for special-needs children.

For a year and a half, the Easter Seals lifeline provided free speech and physical therapy for Camilla, who is now 5 years old. Her parents learned to cope there and were given time off when their child was in the care of Easter Seals. When Dervisevic had doubts about her daughter's progress, Easter Seals was encouraging, she said.

Dervisevic decided to repay Easter Seals for the services and guidance it has given to her and her child by replacing a van that was stolen Oct. 14 and crashed.

The theft devastated the organization, which used the van to transport clients to various activities in the community, said Bob Moore, CFO of Easter Seals Hawai'i.

"What's really wonderful is seeing one of the parents of one of the children we had seen and helped share what an impact we had on her family, and then for her to demonstrate that appreciation in the form of help for current and future children that we'll be serving by donating the van," Moore said. "You could see the joy she had in being able to help others."

Dervisevic said, "They are so supportive. Even emotionally to leave your 18-month-old child somewhere and go get a cup of coffee for an hour it's just a huge relief to have an hour to yourself without wondering, 'How's my child doing?' because many of our children, we're not able to leave with traditional baby sitters because they have head- banging issues or other behavioral issues."

Recently a specialist diagnosed Camilla as possibly having mosaic Down syndrome, a condition similar to Down syndrome, but which can be milder and sometimes undetectable.

"It's like Down syndrome where they have developmental delay, low muscle tone, speech delay," Dervisevic said. "It's difficult to diagnose and often gets undiagnosed if they don't look like a Down syndrome child because they have higher IQs, they function better and it's a lot harder to spot."

The newfound knowledge has set the family on a new path. Dervisevic has sold her Manoa Valley Salon & Spa, but will keep her Waimea, Hawai'i home and has moved her family to New York, where the specialist has his office.

They'll confirm his diagnoses with a skin biopsy and see what kind of treatment, if any, is available, she said. They'll enroll their daughter in a study of mosaic Down children to increase knowledge of the condition. And maybe they'll return to Hawai'i if Camilla can be treated here.

Dervisevic said her main concern is planning for her child's future. But without knowing how the mosaic Down will affect her daughter's development means she'll have to deal with the condition one day at a time.

"The most important thing I've learned in the past five years is to go with the flow," she said. "There's so many things we don't have control over and to try to fight that is a losing battle. Sometimes we have to say I trust whatever's meant to be because it's going to happen no matter how much you kick and scream."

Dervisevic has another daughter who is 7 years old and healthy.

Reach Eloise Aguiar at eaguiar@honoluluadvertiser.com or 234-5266.