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|2/27/2013 ||Email this article Print this article |
DeWitt family focuses on raising awareness of rare diseases
|Motivated by music. Six-year-old Taryn Henschel of DeWitt takes a little break during therapy enjoying a little music with physical therapist Nikki Waddington. Henschel, who recently was diagnosed with Rett Syndrome, undergoes therapy three days a week for two hours each session. Photo by Kate Howes|
|Working as a team. Taryn Henschel poses for a family picture with her twin brothers and parents (counter-clockwise) Austin, Logan, Melissa and Mike. Melissa says helping take care of Taryn, who recently was diagnosed with Rett Syndrome, is an all-family effort. Contributed photo|
By Kate Howes
Mike and Melissa Henschel's three children always have attracted attention, beginning with their 11-year-old twin boys.
From the time they were newborns, any time the couple would take them out in public, people would approach them asking all kinds of questions - were they identical or fraternal, how did they manage taking care of two babies at once, etc.
In recent years, people have taken notice of their 6-year-old daughter, Taryn, as well, though not always in a positive way.
A few months ago, Taryn was diagnosed with Rett Syndrome, a disorder of the nervous system that almost exclusively affects females.
At a glimpse, Taryn doesn't look that different from any other child her age. Yet, since before she even was a year old, certain behaviors indicated something wasn't quite right.
"She wouldn't put any weight on her legs," Melissa explains. "She seemed to be developing normally and then things just hit a plateau when she was 12 months old."
When Taryn was 18 months, her pediatrician told a concerned Melissa children simply develop at different rates.
Yet, her mother's intuition told Melissa there definitely was something wrong with her daughter.
"She wasn't climbing or crawling at all," she relates. "So, we took her to a pediatric orthopedist in Cedar Rapids, who told us she had no physical problems."
Still not convinced, Mike and Melissa took Taryn to University of Iowa (U of I) Children's Hospital where they saw a developmental pediatrician who brought up Rett Syndrome as a possibility, yet never went any further to confirm a diagnosis.
The answer the Henschels finally ended up getting really wasn't much of an answer at all.
"They called it an 'unexplained global developmental delay,'" Melissa says.
When Taryn was 2, after they learned the Shriners Hospital in Chicago was having a screening in April 2008, Mike and Melissa took her in hopes of finding out exactly what was wrong with their daughter.
The couple continued to take Taryn to Shriners every six months for the next two years and saw numerous neurologists, orthopedic specialists, speech pathologists and occupational and physical therapists.
Still, the most they were told was Taryn was suffering from a sensory processing disorder, something that can affect children in any number of ways.
While the diagnosis made sense, it still didn't confirm once and for all what was happening to Taryn.
"It was a very overwhelming experience," Melissa shares. "You tell your story over and over and over to each new specialist and you wonder if you're ever going to find out what's going on or if there is a name for it. When you don't know what's wrong and you don't know how to help your child you just do the best you can. That's just the way it went for Taryn; every test would come back normal."
However, in July 2008, she underwent an MRI, the results of which were not normal. While they still had no definitive answer, the Henschels continued their pursuit of a diagnosis. In the meantime, Taryn received therapy through the Area Education Agency (AEA) for her speech, hand-eye and physical coordination.
Taryn can walk, though she is hesitant and cannot get up and sit down without assistance. The only word she ever has spoken is "no."
At age 3, those services were going to be discontinued for Taryn, and Mike and Melissa were encouraged to have her classified as mentally retarded so she could qualify to continue to receive the therapy she needed to hone and maintain what skills she had.
Melissa admits it was extremely difficult for her to accept her daughter being considered mentally retarded. Yet, at 3 years of age, after two years of seeing specialist after specialist and running test after test, no progress was being made.
"We just felt like we were getting nowhere," Melissa relates.
When Taryn turned 6, the Henschels even took her to the Mayo Clinic wanting to exhaust every avenue they had available to them. In the meantime, Taryn was enrolled in the early learning program at Ekstrand Elementary.
One day at school, Melissa got a phone call saying Taryn had experienced what they thought was a seizure.
"She always has had incidents when she starts to shake, her eyes get big, and she just freezes," Melissa explains. "It usually happened when she was on her feet, and since she's never been steady on her feet, it seemed to happen out of fear."
Yet Taryn's teachers said they were unable to communicate with her, and she simply stared straight ahead.
Melissa wanted to confirm Taryn did, in fact, have a seizure, hoping it might finally lead to an answer.
After undergoing an EEG two days later, Taryn was referred to a pediatric neurologist at U of I Hospitals.
Nov. 30, 2012, Melissa found herself retelling Taryn's story - the same story she had been telling numerous other doctors and specialists for the past 4 1/2 years.
This doctor, however, was positive Taryn had Rett Syndrome. While the DNA test came back negative, the doctor clinically diagnosed Taryn with the disorder.
Finally, the Henchels had the answer they had been waiting for for so long.
"The doctor said she has classic Rett symptoms," Melissa says. "I said, 'Are you kidding me?' After all the tests we went through; when you research Rett Syndrome and read the list of symptoms, it's totally Taryn."
Rett Syndrome is a very individualized disorder that affects children differently, she adds. While the statistics aren't exactly favorable - only 1 percent of children ever learn to speak, and in rare cases, life expectancy can be short, the Henschels are going to make sure Taryn has the best quality of life possible.
The couple also is determined to help educate others and help them understand what Rett Syndrome and other disorders like it are all about.
'Rare Disease Day' Feb. 28
Melissa says Rett Syndrome has thoroughly been researched only in the last 25 years or so.
What they do know is, if they don't continue to hone and maintain any skills Taryn has, she will lose them. Also, there are modes of communication that have worked for some individuals with Rett's, such as the use of iPads, and the Henschels are looking into any and all options.
Regardless, Rett's is somewhat rare and recently Melissa read about a day dedicated to raising awareness about other or unusual disorders.
The fifth annual "Rare Disease Day" is Thursday, Feb. 28. The purpose is to raise awareness around the globe about uncommon conditions and the impact they have on patients' - and their families' - lives.
The campaign began in Europe in 2008 and continues to reach more and more people in multiple countries. Events are held to raise both funding for research and awareness to those who don't know what it's like to live with someone with a rare disease.
Unfortunately, Melissa and her family have had to endure the puzzled and downright rude reactions to Taryn's behavior in public.
"When she becomes over-stimulated, she screams," Melissa explains. "If she's in her wheelchair, people know something's wrong. When she's not in her wheelchair, they just think she's a child who is misbehaving and isn't being disciplined. We've gotten lots of stares and gawks and run into a lot of ignorant people who make assumptions. I'm getting a thicker skin about it.
"When I start to feel sorry for myself, I remember kids like Taryn have a special purpose in life. What I would advise other parents to do who ever have been in our shoes is to try to the best of your abilities to find out what's going on with your child.
"Some days it feels like a full-time job caring for Taryn and doing all the research and making connections with other people dealing with Rett Syndrome. To those who see a child like Taryn in public, I would say, think before you speak, and if you have questions, ask. You have to wonder how many other conditions exist out there that are unknown or rare."