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"No givin' up"

| November 27, 2008 1:00 AM

Girl with rare genetic disorder is inspiration to family and friends

By LYNNETTE HINTZE/Daily Inter Lake

Mikayla Wisher hasn't said a word since she was born 17 years ago. But she communicates with her eyes.

She has subsisted with a feeding tube that her mother, Sabrina Wisher, puts in every morning at 4:30 a.m. But she has learned to eat some foods and loves elk steak with ranch dressing.

She takes seizure medication three times a day. But she smiles so very graciously.

She cannot walk. But she's going elk hunting in her wheelchair this week.

She wasn't supposed to live past a year. But she's still flourishing.

To say that this young woman has overcome adversity is cliche', an understatement at best. Mikayla's mother says her daughter is a miracle in every sense of the word.

Mikayla was born with Aicardi Syndrome, a genetic disorder so rare that doctors have tracked only 300 to 500 cases worldwide. The disorder " theorized to result from a defect on an X-chromosome " affects only girls.

Like most other girls with Aicardi syndrome, Mikayla seemed to develop normally for the first couple of months of her life. She smiled and cooed and responded to her parents. Then out of nowhere, at 2 1/2 months, she began screaming.

The screaming, they soon learned, was caused by infantile spasms, a form of seizures. Scans of Mikayla's brain showed a number of cysts and that she's missing the center part of her brain, the part that sits between the sides of the brain and allows the right side to communicate with the left.

Medication controlled the seizures in their baby, but gone were the smiles, the eye contact, the normalcy. The photographs of Mikayla before Aicardi Syndrome manifested itself are precious to Sabrina.

"They've kept me going all these years," she said.

By the time Mikayla was 5, she had suffered through 42 bouts of pneumonia. Sabrina knows the staff at Family Healthcare and Kalispell Regional Medical Center like she knows her own family.

"They're beautiful people," she said about those who have cared for her daughter through the years.

Mikayla is now a junior at Glacier High School, where she's now learning how to pull clothing off of hangers, a skill she could one day put to use at Flathead Industries.

"She's an amazing young lady," her mother said. "She's my best friend. And she's made me a better person."

Sabrina and Mikayla's father, Mike Dalager, divorced when their daughter was 2.

"He and I were young and scared to death," she recalled.

The role of caregiving for their disabled daughter fell to her, but she embraced the task. Her license plates attest to her will: "No Giving Up."

That sentiment sustained Sabrina recently when she ran a half-marathon in Spokane, pushing her daughter in a stroller the entire way.

Through the years, Sabrina has relied on family and friends to make her daughter's life as normal as possible. Mikayla attended her first University of Montana Grizzlies football game this season. Friends have taken her on boat rides.

"Wherever I go, she's there," Sabrina said. "We're going elk hunting next weekend."

Mikayla has her own specialized seat on the family's four-wheeler. She loves the outdoors and camping trips. And the DREAM ski program has allowed her to cruise down the ski slopes and participate in Special Olympics.

"We've taken home the gold a few times," Sabrina said with a smile.

Organizations such as the Child Development Center also have given the family an enormous amount of support.

"CDC has been a godsend," Sabrina said. "They've helped with equipment, respite care. They've really been a lifeline."

Dawn Cassidy, a licensed practical nurse, is another crucial person in Mikayla's life. She spends the day with Mikayla at school, then brings her home and stays with her until Sabrina gets home from work.

Taking care of a severely disabled child has had its down moments, even though the joys have far outweighed the difficulties.

"I went through all the phases. I was mad at first sometimes. I asked "Why me?", Sabrina said. "If I'm having a bad day, she'll reach over and scratch my leg. She truly is my inspiration and my hero."

Sabrina's other children, Hunter, 10, and his older brother and sister, Steel, 16, and Audrey, 17, all have pitched in to help with Mikayla's care. Their father, John Hahn, built a deck and ramp for better access to the family home.

Sabrina's parents, Jerry and Donna Wisher, likewise have rallied around Mikayla. By working at the family business, Wisher Auto Recycling, just down the road, Sabrina has the flexibility that other jobs might not offer.

With Mikayla's high-school graduation looming just a year and a half away, Sabrina said her goal is to build a studio for her daughter on a part of the seven acres she owns at her home in south Kalispell. Mikayla could have her own space that way, equipped with a room for physical therapy.

The Wisher family is giving back this holiday season by donating a minivan to a needy family. Gene Dziza with Collision Craft donated the body work on the renovated vehicle.

"We'll give it away at Christmas," Sabrina said. "The family doesn't know it yet."

SABRINA IS connected with other parents dealing with Aicardi Syndrome through the Web site, www.aicardisyndrome.org, where Mikayla and other girls with the disorder have space for their families to tell about their experiences and post photographs.

On the Web site, Sabrina is able not only to update Mikayla's progress but also share intimate feelings about being a mother to a disabled daughter.

"She is so strong-willed and what she accomplishes in one day is out of this world," she wrote about Mikayla on the Web site. "People ask me, how do you know? Know what, I ask. Know what Mikayla wants? When I look into those big brown eyes I know exactly what she wants. Mikayla has never said one word to me, I can see and feel the love she has. Her big smile with that little sometimes loud squeal that she has says it all.

"I know God has given Mikayla to me for a reason. I am so very blessed to have her," she continued.

Sabrina remains hopeful that her daughter one day will learn to walk. Mikayla is able to stand and physical therapists continue to work with her to strengthen her legs. Her pastor, Paul Ahrens of Riverside Vineyard, has offered his own encouragement.

"Pastor Paul says he'll walk her down the aisle one of these days," Sabrina said. "I believe she will walk."

And in case she needs a reminder, it's written right on her living-room wall: "Miracles: Believe in them."

Features editor Lynnette Hintze may be reached at 758-4421 or by e-mail at lhintze@dailyinterlake.com