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Couple's 4-year-old daughter, Myiah, has Rett Syndrome, a severe type of autism

by: NEWS PHOTO: SCOTT JORGENSEN -  Heidi Lowry enjoys a moment with her 4-year-old daughter, Myiah, who lives with Rett Syndrome, one of the most extreme forms of autism.  NEWS PHOTO:  SCOTT JORGENSENThere are no ornaments on the Lowry family’s Christmas tree.

It’s not that the Estacada residents lack yuletide spirit—in fact, their home contains several holiday decorations. But the last time they did put ornaments on the tree, their 4-year-old daughter, Myiah, kept taking them all down.

The ornaments are but a small example of the many adjustments that Brian and Heidi Lowry have had to make in order to accommodate Myiah, as she has been diagnosed with Rett Syndrome, one of the most extreme forms of autism.

Myiah’s early development gave no indications that there was anything wrong, and she sat up at six months. But she quit meeting other important milestones a couple of months later. She wasn’t babbling, rolling over, crawling, pointing, waving or clapping.

Obtaining a diagnosis proved to be quite the process, with a series of blood draws and MRIs being done on the very young child over the course of a year.

“It was one thing after another,” Heidi Lowry said.

Heidi was working at her customer service job when she received the phone call about the official diagnosis.

“I could barely drive home,” she said. “It was so many instant shattered dreams all over the place on many levels.”

Since then, the family has learned a lot about how to help Myiah navigate her way through this world. It hasn’t been easy.

Heidi recalls making a routine stop at the grocery store during Super Bowl Sunday a couple of years ago. Myiah was with her and started throwing a tantrum. As it happened, Heidi could hear all the remarks being made by other shoppers about Myiah’s behavior, and left the store in tears.

“I just lost it,” Heidi Lowry said.

More recently, Heidi took Myiah to see Santa Claus. Doing so is a fairly typical wintertime activity for most families. But when Santa asked Myiah what she wanted for Christmas, she didn’t say anything. She couldn’t. Heidi answered instead, stating that what Myiah wanted the most was a voice.

“There was not a dry eye in there,” Heidi Lowry said.

On most days, Myiah’s father, Bryan, wakes up at 6:30 to start taking care of her. He had to quit his job as a certified welder several weeks ago to become a full-time stay-at-home dad.

Daycare can be expensive for any family, but it’s even more so for those with special needs kids.

Bryan, 32, takes Myiah to her therapy appointments several times a week. Applied Behavior Analysis has helped Myiah learn how to crawl, roll over and walk, even though the family had been told that she would never be able to do many of those things.

Up until now, the insurance Heidi gets through her job has helped cover the costs of ABA. But that coverage has since been changed, making life infinitely more difficult for the Lowrys.

“ABA is like Myiah’s best friend,” Bryan Lowry said.

Before ABA, Heidi Lowry said, Myiah could do little more than sit and spin in circles. It has enabled her to work on her hand and motor skills, as well as making eye contact.

Despite all the challenges, Bryan Lowry remains a very devoted father.

“She’s the love of my life,” he said. “Myiah brings so much joy to our house.”

Even though the Lowrys have family that lives nearby, they still very rarely get to go out as a couple. Arranging for a simple dinner and a movie or any other kind of date becomes much more complicated when it involves a child like Myiah.

“In reality, neither one of us is getting a break,” Heidi Lowry said.

All of the adversity has only strengthened the couple’s bond over time.

“It makes or breaks you,” Heidi Lowry said.

Heidi and Bryan get a lot of help from their son, Dustin, 10. Bryan describes him as the “world’s best brother.” The couple also has a 1-year-old daughter, Khloe. Heidi reports that Myiah is great with her siblings, and is aware of her surroundings.

“She’s got a beautiful soul,” Heidi Lowry said.

At this point in her development, Myiah still has a lot of work ahead of her. She still can’t feed or dress herself, and her balance is often unstable. However, Heidi Lowry maintains strong religious conviction and faith. She proudly states that Rett Syndrome has been reversed in mice, and holds out hope that she will someday be able to hear the sound of Myiah’s voice.

“I have a lot more hope today,” Heidi Lowry said.