Mom keeps daughter's memory alive

On May 21, Jamie Christensen will head to Ocean Shores, Washington.

While it might seem like a vacation, the reason for the trip is a somber one. She and her family will mark the 10th anniversary of her daughter, Erica Ann Miller, dying from complications related to Rett Syndrome.

Rett Syndrome is a rare neurological disorder, passed along genetically. It causes disorder in the gray matter of the brain. Of those living with Rett Syndrome, 80 percent have seizures and 50 percent cannot walk. Scoliosis is common and typically those with the disorder cannot speak.

Miller was caught in a perfect storm of the symptoms.

“Basically she was living in the worst-case scenario,” Christensen said. “She lost the ability to walk, talk and feed herself.”

Miller was born a seemingly normal child. But signs things were different started early. She took 15 months to take her first steps. A doctor’s visit prompted concern when Erica was just 2. She wasn’t kicking balls or climbing stairs, a red flag for doctors.

Then came the diagnosis after a month in the hospital for pneumonia. Rett Syndrome almost exclusively affects girls, and Miller was the unlucky one in 10,000 American girls with the disorder.

“My reaction was shocked,” Christensen said. “But I had always been interested in medicine and I was studying to be a nurse when we found out so I wasn’t devastated. We jumped in with both feet and said we’d help her.”

A day in the life working with a Rett Syndrome child isn’t easy.

Christensen said many of the girls who live with the syndrome have trouble sleeping, so 6:30 a.m. was wake-up call. Christensen would bathe and dress her daughter, then help her eat before sending her to school. Edgerton Elementary would bring Miller into a first-grade class to help socially integrate her, but communication was difficult at best.

“She essentially regressed to 18 months old,” Christensen said. “She could say ‘Mama’ and could laugh, but not much more than that.”

Despite this, Miller had many friends and made it to Flathead High School. Miller’s beloved horseback therapy was a bright spot in the family’s life. Christensen recalls the fond memories of camping with her daughter and traveling around the western part of the United States by “plane, train and automobile.”

A doctor had anticipated Erica would die before she turned 10. She exceeded that grim timeline up until her junior year.

“She died a month shy of 17,” Christensen said. “Because of the good treatment she was getting, she lived eight or nine years longer than the doctor thought.”

Miller’s funeral was packed.

She had touched more lives than her mother thought possible, and the memories still brings tears to her eyes.

After her daughter’s death, Christensen and her family needed a reflective trip to get away from everything. This brought them to Ocean Shores, where the family wrote Erica’s name in the sand to remember her.

After Miller’s death, Christensen had a lot on her mind. Two daughters, Sara and Katie, needed their mom. Christensen decided to work with the handicapped as a way of returning some of the knowledge she had gained raising Miller.

“It’s my forte, it’s all I know,” she said. “It’s just what I love doing.”

Christensen is a bus aide in Kalispell Public Schools, working with some of the most challenged children in Kalispell.

“I’m a big-time advocate for neurologically challenged kids,” she said. “When Erica and I would go out, people and kids would be leery of approaching us, but I wanted all of them to come talk. Some parents would have hated that, but I was never like that. I know she loved it.”

Miller’s sisters were only 10 and 8 when she died.

Now Sara, a student at Pacific Lutheran University, and Katie, a senior at Glacier High School, will head to the ocean to pay their respects to their big sister. She would have been 27 this year.

“It’s become a tradition of sorts for us,” Christensen said. “She taught us a lot.”

And even though the waves will erase the Erica Miller written in the sand, the memories of the person still resonate with many in the Flathead Valley.

Reporter Ryan Murray may be reached at 758-4436 or by email at rmurray@dailyinterlake.com.