Family says medical miracle helped their children walk again
Published: February 26, 2007
It’s heartbreaking news hearing that your children will never walk.
But despite the diagnosis, one family refused to give up and they now believe in miracles.
Life as one Valley family knew it was about change when doctors diagnosed their twins with cerebral palsy.
But it would be their mother’s determination that would eventually lead them to what she calls a medical miracle.
In 1993, life was good for Retta and Joe Beery of Phoenix.
They were enjoying being first-time parents.
Their son, Zach, was not only a good baby, but very advanced for his age.
“He slept through the night,” Joe Beery said. “We thought we were super parents because he was so easy.”
Three years after Zach was born, came twins Alexis and Noah.
“Their delivery went well,” Retta Beery said. “We went home the next day and our house was all set up for these beautiful babies and we got home and they screamed and cried all night long.”
While the babies were suffering from colic, the Beerys didn’t care. They were just so excited to have three healthy children.
But nine months later, everything changed.
“They weren’t reaching any of their milestones,” Retta said. “They were both completely floppy and had no muscle tone at all.”
Determined to figure out what was wrong with their twins, the Beerys were in and out of doctor’s offices for the next two years.
“I got really frustrated because it was like you should know what’s wrong and you should be able to fix it,” Joe said.
It wasn’t until the twins were almost 2 years old that a diagnosis was made.
Retta and Joe were told the chances of their twins living a normal life were slim because doctors believed they had cerebral palsy.
“We knew at this point that this was going to be something that would be with us forever,” Joe said.
The twins were not only developmentally delayed, but Noah also threw up on a daily basis.
In home video of Alexis, you can see her falling down and often her eyes would roll to the back of her head.
“She could walk, eat and chew and by 10:30 in the morning she could no longer function,” Retta said.
Determined to find more answers, Retta started doing research.
It would be an article she found written 11 years earlier that would change this family’s life once again, but in a direction some might not think possible.
“We knew we were both witnessing a miracle,” Retta said. “We both knew it and had no doubt.”
After years of searching for help, the Beerys found the answers they were looking for hundreds of miles away.
When doctors diagnosed Retta and Joe Beery’s twins with cerebral palsy, they knew their lives had changed forever, but they were determined to give their kids a chance at a normal life.
What this mother found ultimately changed her twins’ lives and she believes it was a miracle.
“One of my biggest worries my whole life was who was going to take care of them when I was gone,” Joe said.
The twins went through every therapy possible from speech to occupational.
While Noah’s symptoms improved as he got older, Alexis’ got worse.
“Alexis had gotten to the point where she was a couple months from a wheelchair,” Retta said.
Retta was always looking for the latest research on cerebral palsy.
It was during one of her searches that she came across an 11-year-old article that would change her family’s lives forever, a helping hand she believes God had something to do with.
“When I read this article, without a doubt in my head this what she had,” Retta said.
The article referred to a disorder called dopa-responsive dystonia, which can mimic cerebral palsy.
“Dystonia is a rare disorder and it’s also infrequent because most physicians are not aware of it and so it’s not often recognized,” Dr. John Fink said.
Dystonia patients tend to function very well in the morning and then as the day progresses become more debilitated.
“She (Alexis) had times of the day she was more able to do activities and times of the day when she was much less functionally independent,” Fink said.
Fink, from the University of Michigan, is the neurologist who made the diagnosis of dopa-responsive dystonia in the twins.
“It’s important that parents continue to look for answers whenever the advice they’re given or the explanations they’re given are unsatisfying or don’t fit with what they’re observing,” Fink said.
Within 24 hours of getting the medication, Alexis went from hardly functioning to acting like a normal 5-1/2-year-old.
“I was jumping, walking, climbing, sliding down and doing all of the stuff I wanted to do,” Alexis said.
“When they came back it was like where did my sister go? Where did my brother go? Where did you both go?” Zach said.
Noah even stopped throwing up every day.
“It felt good,” Noah said.
It’s been more than five years since the new diagnosis and by looking at Alexis and Noah now, you would never know that anything was ever wrong.
“We’ll never go back and say why did you miss this?” Joe said. “It’s just always been a mission to make sure nobody else has to go through.”
Fink wanted to stress that the twins’ case was very rare.
While Alexis made an overnight recovery after taking the medication, that isn’t always the case for other patients.
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