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Thursday, July 17, 2008

'God makes these kids for a reason'

Donna Lenz Wright/The Week

Zoe Orcutt's sweet smile and warm blue eyes make it impossible not to instantly fall in love with her.

Donna Lenz Wright/The Week
Zoe takes a little break during her tiring therapy workout.
At only 21 months old, she displays just a few of the symptoms that will likely be big challenges later due to Angelman Syndrome (AS).

Her head and arms tremor ever-so-slightly at times as she smiles brightly at you and reaches for the toy you offer. And at just 18 pounds, Zoe cannot sit, crawl or speak yet. But because she’s so adorable and pure, the red flags are easy to overlook.

Zoe's mom, Cyndee, began noticing them about a year ago.

AS symptoms include seizures, stiff jerky arm and leg movements, speech impairment, movement and balance disorder, frequent laughter and smiling, excessively happy demeanor, easily excitable, microcephaly (smaller than normal head size), attention deficits and short attention spans, but all symptoms need not be present for a diagnosis.

As she grows up, the symptoms will become larger obstacles as the need to talk, walk and master skills become more important.

Zoe's parents, Dustin and Cyndee, of rural Elkhorn, want to share their story for two reasons.

First, they want to get the word out that children with disabilities aren’t different or scary.

"Especially other children are sometimes afraid to approach them or play with them," Cyndee said. "Other times people just stare."

That's why she's planning a section in her upcoming vacation Bible School class at the Southern Lakes Evangelical Free Church about children with disabilities.

"I'm planning to make it part of the 'serving the community' section," she said. "A lot of times other kids are afraid of kids with disabilities and don't want to try to play with them because they think they're different--but they're not.

"I want to drive home the fact that God chose her to be this way long before she was born. I believe that God puts these children in the appropriate homes."

Dustin is a personal trainer, and is extremely knowledgeable about the muscle groups his daughter needs to strengthen to accomplish each goal.

Cyndee teaches a variety of dance classes at the Dance Factory in Delavan and the Mercy Fitness & Whitewater Aquatic Center.

Zoe loves to attend the classes with her mom and has become everyone's adopted daughter/playmate in the process. Photos of her in tutus and ballet slippers couldn't be more precious.

Second, they're hoping that getting the word out about AS may bring more awareness, therefore more support in finding a cure and/or treatment(s).

"People have causes," she said. "Athletes and stars adopt causes. I'm hoping maybe that can happen with AS."

Actor Collin Farrell's 4-year-old son, James, has been diagnosed with AS, she said.

"At the AS Walk-A-Thon, I heard that they still haven't earned their first $1 million. Then I think of all of the millions that have already been spent by politicians trying to get elected," she said, annoyed.

But nailing down AS as a specific diagnosis is in its very early years, and it's quite rare, present in only an estimated one in 15,000-20,000 births, according to the Angelman Syndrome Foundation, Inc.

So the determination of people like the Orcutts will undoubtedly benefit the cause. Meanwhile, they're counting their blessings and loving their beautiful little daughter.

"Zoe is my first child, so I have nothing to compare her to--so she's perfect," Cyndee said.

"When I take her to Children's Hospital I see sick kids. They're so very sick.

"She's not sick."

The Orcutts moved to Wisconsin from Lake Tahoe, Calif., to start a business, KD Bros. Construction Co., LLC, (608) 883-2147, specializing in residential construction.

But Cyndee didn't like the idea in the beginning.

"I came kicking and screaming," she says. "I didn't want to leave my home--I lived there all of my life.

"But then we got here, I got pregnant and Zoe was born with this; then I find out all these things we have here like the Birth-3 Program, our physical and speech therapists, S.M.I.L.E.S.--and Lakeland School, if we end up needing it. To top it off the Angelman Foundation (headquarters) are just down in Aurora (Ill.).

"We were meant to be here."

For more information about AS, visit www.angelman.org. Feel free to make a gift in Zoe's name.


Angelman Syndrome

Dr. Harry Angelman published the first article about AS in 1965. The topic fell into obscurity with cases being undiagnosed or misdiagnosed as cerebral palsy, autism or other childhood disorders until modern genetic testing gave us the ability to identify it in the early 1980s.

In 1997 the exact chromosomal cause was identified as a deletion in chromosome 15 in most cases.

Estimates are that one in 15,000-20,000 births will have AS, though it's not usually recognized until 3-7 years of age.

*Source: Angelman Syndrome Foundation, Inc.



Anonymous Anonymous said...

What a perfect title for this article. As I read this it made me go back in time and think about my little girl. She was also diagnosed with AS. We had many obstacles in life but we managed to get through them. My little angel ( Raina) also had a hard time with other people understanding her disabilities, but as I educated everyone she was then accepted through out our whole community. She actually grew to know just about everyone in our small town. Raina ended up to be a very popular, and a loved little girl. This article made me feel good and then it also made me cry, thinking of everything we went through together, but I wouldn't change a thing. I love and miss her very much. You see, I just lost my precious little angel July 2, 2008. She will forever be in our hearts and in the communities hearts. Mommy misses you Raina.

Karen Pence
mom to Raina King del+

November 22, 2008 4:11 PM  

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