Birthday celebration helps others with rare developmental disorder

July 19, 2011

By Emily Baer

Dalean Pack prepares to blow out the candles on her 23rd birthday cake. By Dale Pack

Dalean Pack smiled as friends and family wished her a happy 23rd birthday at the Lake Sammamish Elks Lodge No. 1843 on June 16. But the party was more than just a birthday celebration.

Dalean, who was diagnosed with pachygyria soon after birth, is the Washington Elks Therapy Program for Children poster girl. The party was also a fundraiser for the program.

Dalean, of Preston, was originally diagnosed with lissencephaly, a gene-linked brain malformation that results in the absence of folds, called gyri, in the cerebral cortex.

“Doctors said she wouldn’t make it past her first year,” Dalean’s father Dale Pack said.

After a year and a half, doctors changed Dalean’s diagnosis to extensive pachygyria, a rare developmental disorder characterized by broad, flat and relatively few gyri. The condition is also called “incomplete lissencephaly” because it does not affect the entire brain.

Dalean typically has five different kinds of seizures at various times throughout the day. She must crawl or use a walker or wheelchair to move around, and she needs medicine to sleep at night.

When Dalean was born, her mother Jean Pack left her job to take care of her daughter. At 4 weeks old, Dalean began seeing a therapist at the Kindering Center in Bellevue. Travel was hard on the seizure-prone infant, but she continued to see the Bellevue therapist until she was 1. When Dalean’s Bellevue therapist went on maternity leave, she suggested that Jean look into the Elks therapy program.

Each state designates a cause that their constituent Elks lodges work to support. Washington state lodges raise funds for the Therapy Program for Children.

The program, which began in 1954, provides “home-based occupational or physical therapy to children with developmental delays or physical disabilities,” according to the Washington State Elks Association website.

Families served incur no cost for the therapy.

An Elks-sponsored therapist began visiting Dalean when she was 1. The therapist worked on Dalean’s strength in a hot tub until she was able to sit up on her own. She continued to work with Dalean for four years.

“The Elks therapists are excellent. They are so good,” Jean said. “And Dalean had such a great need for therapy.”

Dalean “army crawled” until she was 4 1/2 and then graduated to crawling. She took her first steps when she was almost 10, Dale said. In 2006, Dalean received her high school diploma from Issaquah High School.

“This is sentimental to me,” he said regarding talking about his daughter. He paused as his eyes filled with tears. “My kids are my life. It’s all joy, but it’s hard to talk about.”

Jean spoke with pride of the big wheel that her husband made for Dalean when she was younger and how he raised the seat as she grew. Dalean likes to dance with her dad and to use her Mickey Mouse bowling ball in the Special Olympics. This year, Jean and Dale gave their daughter an enclosed trampoline for her birthday.

Dalean’s older sister Cyndy Sikes has her over on weekends. Dalean likes to play ball on the trampoline at Cyndy’s house and to ride her Big Wheel over a small jump in the yard.

How to help

Donate to the Washington Elks Therapy Program for Children at www.tallelks.org/support.htm.

“If I’m having a bad day,” Cyndy said, looking at her sister, “I listen to her laughs, her hugs, her sound effects and it makes me feel better.”

Motioning toward parents and laughing kids sitting next to and around her, Dale said that his daughter met her first friends at the Elks lodge.

As a show of their appreciation for the unconditional support they have received from the Elks, this is the second year the Pack family has hosted a fundraising dinner at the Lodge. All proceeds are given to the Elks therapy program.

“It’s really important for us to get the word out and to raise money,” Jean said.

The Benevolent and Protective Order of the Elks originated in New York shortly after the Civil War, according to Brad Burns, a Lake Sammamish Lodge member. For many years the club was a support group for actors. Later, it began taking on a philanthropic role and establishing lodges in areas throughout the United States.

The Elks are known for providing services to veterans and meeting other community needs. They are second only to the U.S. government in college scholarship allocation.

Emily Baer: 392-6434 or isspress@isspress.com. Comment at www.issaquahpress.com.

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