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The Honolulu Advertiser
Posted on: Tuesday, March 21, 2006

Ducks ready to dunk

By Catherine E. Toth
Advertiser Staff Writer

Donna Fouts, head of United Cerebral Palsy Association of Hawai'i and the originator of its annual race, says her Iwilei office, filled with collectibles, is a tribute to the yellow critters, which have helped raise some $750,000 for people with cerebral palsy and awareness of the disorders over the past 18 years.

DEBORAH BOOKER | The Honolulu Advertiser

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19TH ANNUAL GREAT HAWAIIAN RUBBER DUCKIE RACE

Benefit for the United Cerebral Palsy Association of Hawai'i

Saturday

  • Pre-race festivities: 9 a.m. to 12:30 p.m. at McCully Shopping Center

  • Hawai'i's Shortest Duck Parade: 12:45 p.m., from McCully Shopping Center to Kalakaua Avenue bridge

  • Race: 1:44 p.m. at the Ala Wai Canal

    $5 suggested donation to adopt a duck

    532-6744 or ucpa@ucpahi.org

    www.ucpahi.org

    Also: The 15th annual Waikoloa Rubber Duckie Race takes place on July 4 at the Waikoloa Kings' Shops.

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    MAJOR TYPES OF CEREBRAL PALSY

    Spastic cerebral palsy: This is the most common type. It causes muscles to stiffen, which makes movement difficult. It can affect both legs (spastic diplegia) or one side of the body (spastic hemiplegia). In the most severe cases, all four limbs and the trunk are affected (spastic quadriplegia).

    Athetotic cerebral palsy: Ten to 20 percent of people with cerebral palsy have this form. It affects the entire body and often causes uncontrolled, slow movements.

    Ataxic cerebral palsy: The least-common form, it affects balance and coordination.

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    KAREN MARCH | 2002

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    LEARN MORE

    Epilepsy Foundation: www.epilepsyfoundation.org

    March of Dimes Birth Defects Foundation: www.marchofdimes.com

    Easter Seals: www.easterseals.com

    United Cerebral Palsy: www.ucp.org

    National Disability Sports Alliance: www.ndsaonline.org

    Children's Neurobiological Solutions Foundation: www.cnsfoundation.org

    Children's Hemiplegia and Stroke Association: www.hemi-kids.org

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    Fouts displays the new ducks for this weekend's race.

    DEBORAH BOOKER | The Advertiser

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    Peter Chiswick hasn't missed a race in 12 years.

    And not because he won two roundtrip tickets to the Neighbor Islands once.

    The 53-year-old contractor from Kailua "adopts" a duck in the annual Great Hawaiian Rubber Duckie Race each year because he believes in the charity it supports — the United Cerebral Palsy Association of Hawai'i.

    "I found out how much it's helped the keiki," said Chiswick, owner of Energy Unlimited, who names every duck he adopts Fred. "That's why I do it."

    Over the past 18 years, the race, which takes place Saturday at the Ala Wai Canal, has raised nearly $750,000 for people with disabilities in Hawai'i.

    A portion of the proceeds pays for the UCPA's Child Development Center, a birth-to-age-3 program that services nearly 30 children a year. It provides occupational, speech and physical therapy for the children, many of whom have cerebral palsy.

    Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally don't worsen over time, according to the National Institute of Neurological Disorders and Stroke. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the ability to control movement and posture.

    Studies have shown that there are about 500,000 people nation-wide with some degree of cerebral palsy. Around 5,000 infants and toddlers and 1,500 preschoolers are diagnosed each year.

    Symptoms include difficulty with fine motor tasks such as writing or using scissors, and difficulty maintaining balance or walking. Some people with cerebral palsy are also affected by other medical disorders including seizures or mental impairment.

    Darla Casil, a 23-year-old mother from Waialua, knows firsthand how much the development center helps children with cerebral palsy.

    Her daughter, Raian-Hailey Kamakahi, has been attending sessions there for more than a year.

    Born at 30 weeks, Raian-Hailey suffered a brain hemorrhage, which can increase the risk of learning disorders later in life. The baby started showing developmental delays — not walking, not talking — that worried Casil.

    In 2004, Casil went to a UCPA fundraiser at Windward City Shopping Center and learned more about cerebral palsy. She enrolled her daughter at the Child Development Center that September.

    After more than a year in the program, Raian-Hailey can crawl, is more vocal and sociable, and is now starting to walk.

    "Everybody sees the difference in her," Casil said. "I really didn't know anything about CP before. I've learned how this is going to affect her."

    Part of the goal of the Great Hawaiian Rubber Duckie Race is to raise awareness about cerebral palsy, which has been on the rise lately, said Donna Fouts, executive director of UCPA of Hawai'i.

    "It's so much more than just a fundraiser," Fouts said. "This is our window of opportunity to educate the public."

    Many people don't fully understand what cerebral palsy is, Fouts said. She hopes fundraisers like these will debunk the myths and stereotypes about people with disabilities.

    "Our thing is to provide quality of life," Fouts said. "Just because you need help doesn't make you less of a person ... It's about seeing what the person can do, not what they can't do. That's what we're about."

    Fouts came up with the idea for a rubber-duck race in the Ala Wai 19 years ago. (Actually, she "borrowed" the idea from the Alberta Heart and Stroke Foundation — Fouts saw the organization's event on CNN.)

    The race caught on with other UCPA affiliates, some of which hold their own versions of the fundraiser in their states.

    For the first three years, UPCA of Hawai'i borrowed 20,000 racing ducks from the Canadian nonprofit before buying its own fleet.

    Custom-made for racing, the ducks have weighted tails that keep them upright and are durable enough to withstand years of competition, even traveling to Neighbor Islands.

    But last year, Fouts decided it was time the ducks retired. She ordered a new batch of 20,000 ducks — same design, same specifications — which cost $25,000.

    The new ducks are a tad plumper and a little more suntanned than the previous generation, many of which will "retire" to Kaua'i to compete in the island's first race in October 2007. Another group may head to Maui, another to the Big Island. The remaining ducks will be auctioned on eBay, the proceeds going directly to UCPA's programs.

    "If someone told me 19 years ago that I'd be talking about these ducks raising $750,000, I would've said, 'Get outta here!' " Fouts said. "I never would've imagined it would become our trademark."

    Indeed, the ducks are everywhere at the UCPA offices.

    Fouts has thousands of duck collectibles, from toothbrushes to suncatchers to paper-clip holders, in her office. Duck figurines fill nearly two bookshelves, wearing everything from sunglasses to cowboy hats to snorkel gear.

    Even Fouts, who has headed the nonprofit for 19 years, was decked in ducks, wearing duck earrings, socks and a watch.

    "I really take pride in this, and the office is a tribute to that," Fouts said. "It's amazing how different they are all. A duck is just a duck? No way."

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    FACTS ABOUT CEREBRAL PALSY

    Signs and symptoms

    In general, children with cerebral palsy exhibit a wide variety of signs and symptoms, ranging from mild to severe. Some children with cerebral palsy have severe mental retardation, but others are extremely bright. Many need a wheelchair and extensive, lifelong care. But some require little or no special assistance.

    These signs and symptoms don't worsen with age. They may include:

  • Lack of muscle coordination when performing voluntary movements (ataxia)

  • Stiff muscles and exaggerated reflexes (spasticity)

  • Asymmetrical walking gait, with one foot or leg dragging

  • Variations in muscle tone, from too stiff to too floppy

  • Excessive drooling or difficulties swallowing, sucking or speaking

  • Tremors

  • Difficulty with precise motions, such as writing or buttoning a shirt

    Causes

    Cerebral palsy results from an abnormality in or injury to the cerebrum, the largest area of the brain that controls sensation and voluntary motor function.

    Doctors and researchers have identified many possible causes of congenital cerebral palsy, including:

  • Maternal infection during pregnancy, such as rubella or other viral infections

  • Severe jaundice in newborns, which may be caused by infection, severe bruising or problems with red blood cells due to ABO or Rh incompatibility  two incompatibilities between the blood of the mother and her fetus

  • Abnormal brain development before birth, resulting from genetic causes or metabolic disorders

  • Disturbance to brain circulation before birth, caused by an artery spasm or blood clot, similar to a stroke in adults

    Risk factors

    Most children with cerebral palsy don't have any apparent problems during development and birth. But some factors may increase the risk of cerebral palsy:

  • Babies that are premature or have a low birth weight

  • Fetuses in a feet-first position (breech presentation) at the beginning of labor

  • Complicated labor and delivery

  • Maternal infection during pregnancy

  • Health problems in the mother during pregnancy that impair normal blood circulation to the uterus and placenta

    Coping skills

    When a child is diagnosed with a disability, it forces the whole family to face a range of new challenges. Here are a few tips for caring for yourself and your child:

  • Foster your child's independence: Encourage any effort at independence, no matter how small. Just because you can do something faster and quicker doesn't mean you should.

  • Be an advocate for your child: You are an important part of your child's health care team. Don't be afraid to speak out on your child's behalf or to ask tough questions of your physicians, therapists and teachers.

  • Find support: A circle of support can make a big difference in helping you cope with cerebral palsy and its effects. As a parent you may feel grief and guilt over your child's disability. Your doctor can help you locate support groups, organizations and counseling services in your community. Your child may benefit from family support programs, school programs and counseling.

    Source: Mayo Clinic

  • Reach Catherine E. Toth at ctoth@honoluluadvertiser.com.