Moffat County Locals: Klein family trusts in God to see them through difficult times
December 23, 2016
Craig — The beautiful blonde-haired, blue-eyed baby girl looked like a tiny perfect princess, but she was battling a monster hidden under her skin and encoded in her DNA.
She was only 18 months old when Craig girl Aveahna Klein started the fight of her life.
And her parents confronted the greatest fear of every parent — a sick infant and a long line of doctors that were unable to provide answers about the cause.
By age 4, the toddler had broken both of her legs, she had dropped off the growth chart, was malnourished, her liver was struggling and she seemed to have frequent headaches, said mother Krissy Klein.
Krissy and her husband, Zach Klein, both grew up on the Western Slope. They met in Grand Junction, married and then started a family. They have four children: Aaron, age 10; Haleigh, age 9; Aveahna now age 7 and Zavrick age 6.
In 2014, Zach's work as a radiologist brought the family to Craig and The Memorial Hospital. By then they had been struggling for five years to find answers to Aveahna's poor health.
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They believe the move to Craig was the best thing to happen to the family as it brought them under the care of pediatrician Dr. Kristie Yarmer and she brought them hope.
"We saw many doctors, she's the only one who gave us any hope," Krissy said. "She told us that something wasn't right and that she couldn't help, but she would find someone who could."
Yarmer works at The Memorial Hospital at Craig.
"When I met Aveahna for the first time she had a fairly complex medical history. She came to clinic with a variety of symptoms which involved multiple body systems," Yarmer said. "This history along with her physical exam made me concerned for a possible genetic disorder, such as a connective tissue disorder. I felt that a geneticist could be helpful in finding a diagnosis so that appropriate treatment decisions could be made."
Dr. Yarmer's instincts would prove correct as tests at Children's Hospital in Denver reveled that Aveahna has both a genetic disorder called Chiari malformation and the connective tissue disease Ehlers-Danlos Syndrome.
Chiari malformations are structural defects in the cerebellum that most often occur during fetal development pushing the brain into the spinal canal and brain surgery is one of the treatments, according to the website of the National Institute of Neurological Disorders and Stroke.
Ehlers-Danlos Syndrome, often referred to as "EDS" is a collection of heritable connective tissue disorders, according to the website of the Ehlers-Danlos Society.
Both conditions create chronic pain, difficulty swallowing and central sleep apnea.
"Many fall asleep and never wake up," Krissy said. "I can't imagine being 7 and hurting chronically all the time."
Aveahna has already had one brain surgery, but she seems a perfect princess with only a purple bedazzled neck brace hinting at her health problems.
"You see a beautiful blue-eyed girl. They don't realize that the night before she's been up all night screaming because her bones hurt," Zach said.
Both conditions are genetic and this year Aveahna's older brother and sister both tested positive for Chiari. In late December, the youngest member of the family 6 year old Zavrick, will be tested.
Family time has taken on a new level of importance for the Kleins.
"We want our kids to live long happy lives," Zach said.
But, they know their children will now have to fight like warriors.
Aveahna is credited with the family motto — "God is big and he'll take care of it.”
Between frequent doctor visits and trips to Denver in their aging vehicle for treatments and tests at Children's Hospital, the children go to school at Calvary Baptist School where Krissy works as a paraprofessional.
"It is important to remember that kids are kids regardless of any medical diagnosis they may have," Yarmer said. "Finding ways to allow children to participate in activities to the degree they are safely able to is important not just for physical health but mental health as well."
Krissy has taken to Facebook to share their story to raise awareness and to connect with others.
"I've been taught that you can deal with situations either privately or by impacting others with your struggles. I know there must be other people out there with kids that have issues and you don't know what it is," she said. "I never want our story to be a sob story. I want our story to be one of hope."
The Craig community and the virtual community have responded to the family's fight with an outpouring of support.
"I don't think we would have gotten this much help anywhere else but Craig," Krissy said.
The family never thought that they would need help.
"We always wanted to pay it forward. We wish we could give as much as people have given to us,” Krissy said.
The family is facing the possibility of a second brain surgery for Aveahna and a first for Haleigh. They will have to travel next year to New York to consult with a Chiari expert and brain surgeon.
Zach worries that he won't have enough vacation to be with his family and that without help they won't make it.
"We do struggle. We've been humbled and had to accept help we never thought that we would have to accept," Krissy said.
As those fears creep up on the family Aveahna is there to remind them — "God is big, Mom. He'll take care of it."
They have a long list of people to thank, but as Krissy says, "we thank God the most."
Anyone wishing to help the Klein family may donate using their GoFundMe page at https://www.gofundme.com/24a69dwk