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Stadlers searching for answers for their young daugher while finding the resources to fight on

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By John Carr

 

 

HOW TO HELP

To assist the Stadlers in getting to Cincinnati, friends of the family have created a fund to help out. Donations can be made at any Chase Bank. Checks can be deposited in the name of the “Bentleigh Ky Stadler Donation Account.” In addition to the direct deposit of donations, a fundraiser will be held in Longmont on Bentleigh’s behalf from 10 a.m. to 6 p.m. Saturday, June 7. Additional information can be found on the GoFundMe page for Bentleigh (www.gofundme.com/Pink-Zebras-Bentleigh-Ky), on the Facebook page Pink Zebras (www.facebook.com/pinkzebrasbentleigh), or by calling 303-647-0166.

 

 

For the Stadler family of Henderson — parents Sarah and Justin, daughters Breanna, 9, and Rhylee, 4, and son Traytan, 6 — the prospect of a new addition to the family filled each day in early 2012 with anticipation and excitement.

All three children were old enough to understand a new baby was on the way, and Sarah’s pregnancy was proceeding normally. Unfortunately less than halfway through her term Sarah’s doctors became baffled when, for more than four weeks, the baby stopped growing. 

As disconcerting as it was to her doctors, for Sarah and Justin it was the uncertainty of the unknown that proved hardest to understand and handle.

Justin has been a member of the Brighton Police Department for six years and it was a little easier for him to lose himself in his work than for Sarah, who became the focus of an endless barrage of tests and specialists’ preliminary diagnoses. The need for complete bed rest resulted in Sarah having to quit her job as an office manager for a moving company.

Changes in medicine seemed to have a positive effect on the baby’s progress, but when it was time for her to be born her medical team was still concerned that the new baby was not ready to enter the picture.

On July 30, 2012, the Stadlers welcomed Bentleigh Ky Stadler into the family. At the time she was born doctors were hopeful that the issues during pregnancy were now behind the newborn. Their optimism proved short lived. Within the first week after her birth, Bentleigh lost nearly 20 percent of her birth weight. She seemed to be having problems eating and then digesting her food.

Sarah and Bentleigh have become fixtures at Children’s Hospital in Aurora. Over a 23-month period Bentleigh has been tested for virtually every imaginable disorder. According to Sarah, Bentleigh has been diagnosed as slow to grow. Doctors have labeled her as having a Failure To Thrive (FTT) disorder, meaning that her body has difficulty accepting food and digesting it. Beyond her broad diagnosis, Bentleigh has baffled specialists from around the Denver metro area.

Initially her medical team inserted a feeding tube through her nose into her stomach. As with food, Bentleigh had difficulty accepting the tube and it failed to work. Surgery resulted in a feeding port being inserted directly into her stomach. Once again Bentleigh seemed to be having extreme problems digesting the nutrition. Doctors finally decided to bypass her stomach completely and to introduce nutrition directly in to her intestines through a newly inserted port — this is the system she is now living with.

In October 2013 Bentleigh stopped eating and drinking. Doctors struggled to understand what the problem was. Three months later Bentleigh was admitted into Children’s Hospital for a month. Each time a physician feels they have found the problem, the remedy fails. After more than two years of testing and treating the young child, her team of specialists acknowledged they had reached a dead end. Recently her doctors recommended that Bentleigh be seen and tested by specialists at Children’s Hospital in Cincinnati, Ohio — a team acknowledged as the national leader in children’s eating disorders.

The medical calamities being faced by Bentleigh — described by Sarah as an “invisible disease” — include food allergies that cause her body to react violently. She has a nearly nonexistent immune system and must be protected from potential germs and illnesses. Her physical growth has been severely stunted such that she still wears clothing of a child half her age. 

And then there’s the pain suffered from receiving nutrition, which the family described as excruciating. The baby cannot sleep for more than 30 minutes without waking up in agony.

It is difficult for her young sisters and brother to understand what is going on. Things regular families do normally and without hesitation are out of the question. Bentleigh must be protected from the elements. Even routine trips to buy groceries require Bentleigh to ride in a sterile stroller and not to be approached by strangers.

Yet the greatest toll seems to have affected her parents. Since Bentleigh is not able to sleep through the night, Justin and Sarah take turns sleeping alone with her. When she awakens in pain, they say it takes time and a soothing hand to calm her back to sleep. Since Justin has to be to work as a police officer, he ends up spending many nights sleeping alone while Sarah takes care of the baby. Sarah admits she does not remember what a whole night’s worth of sleep is like.

Asked of their greatest challenge has been, Justin and Sarah responded nearly in unison.

“Not knowing is the hardest thing to accept,” Justin said. “For more than two years doctors have worked to find out what is wrong with Bentleigh, and we are no closer to an answer now than before she was born.”

“Seeing my daughter dealing with so much pain and agony and not being able to help is ever so painful to deal with,” Sarah said.

Another major obstacle facing the Stadlers is financial. Bentleigh’s insurance coverage does not cover routine testing or medical visits outside of Colorado. The team of specialists based out of Cincinnati wants to spend at least two weeks testing Bentleigh at their facility later this month. 

The cost of the trip, traveling, food, motels and incidental expenses pales in comparison to the more than $10,000 doctors predict their tests will cost. Should more tests be required, that cost could rise accordingly. None of these expenses will be covered and as such must be paid, upfront, by the family.

To assist the Stadlers in getting to Cincinnati, friends of the family have created a fund to help out. Donations can be made at any Chase Bank. Checks can be deposited in the name of the “Bentleigh Ky Stadler Donation Account.”

In addition to the direct deposit of donations, a fundraiser will be held in Longmont on Bentleigh’s behalf from 10 a.m. to 6 p.m. Saturday, June 7. Additional info can be found on the GoFundMe page for Bentleigh (www.gofundme.com/Pink-Zebras-Bentleigh-Ky), on the Facebook page Pink Zebras (www.facebook.com/pinkzebrasbentleigh), or by calling 303-647-0166.

When asked of the meaning of Pink Zebras, Sarah Stadler pointed out, “Bentleigh is like a zebra, made up of many complex colors, and since her favorite color is pink, she is a pink zebra.”