Second Chance Twelve years after being misdiagnosed with cerebral palsy, the Beery twins are leading normal, active lives. A mother’s tenacious research and what she considers a miracle have set them free. BY JIMMY MAGAHERN Published by: Times Publications, July 2009

Retta Beery shuffles through some early photos of Alexis and Noah, her fraternal twins – physically challenged since birth, and eventually diagnosed with cerebral palsy at 20 months of age.

In almost every photo, all in the family – Retta, husband Joe, oldest son Zach and the twins – are smiling. But it’s the shared, brave smile of a family coping with demanding disabilities. A Christmas card snapshot taken on the putting green in the backyard of their Ahwatukee home finds the twins propping themselves up on golf clubs; a Disneyland photo shows their heads leaning back on a costumed Mickey and Minnie for support.

There’s a special sadness in doing the Magic Kingdom on crutches, and fanning through the photos seems to bring it all back for Retta.

“It’s draining just going through these pictures again and remembering those days,” she sighs, sifting through the stack. There’s Alexis wearing the helmet to protect her head from the falling episodes Beery says would occur 20 to 30 times a day. In several of the shots, older brother Zach is positioned behind his younger siblings, dutifully propping them up (their first neurologist described their bodies as “floppy”) for the camera.

Then Beery turns to look out the window and her mood instantly brightens. There, leaping and laughing on the in-ground trampoline in the backyard, are her now twelve-year-old twins, looking as healthy and energetic as any graduating sixth-graders. A basketball court graces the front yard of their sprawling new home in Olivenhain, California, an idyllic hillside community near Encinitas the Beery’s recently settled into. Mountain bikes and boogie-boards stand at the ready in the garage, evidence of the active lifestyle the twins now enjoy.

It’s as if a Hollywood screenwriter took a look at the Beery’s achingly sad life and decided it needed a re-write, with a new pair of preteens playing the part of the now healthy twins.

“It’s been seven years now, and they’re doing great,” Retta says, still visibly moved by what she calls their “miracle.” “Alexis just finished up a good season with her softball team, and now there’s a really good club basketball team out here that’s recruited her. And Noah is really athletically gifted, too. He wants to play football now – probably the one sport I’d prefer he didn’t get into!”

Alexis, bounding back into the kitchen with Noah for their daily 3:30 p.m. dose of L-dopa, the tiny yellow pill responsible for this miraculous transformation, remembers the first day she returned home after seeing the doctor in far-away Michigan who turned her life around. It all happened with a little help from her mom, who discovered, through her own tenacious research, the true cause of her children’s disabilities.

“When I got better, I was all about wanting to play,” says Alexis, barely stopping to breathe after a half-hour of trampoline gymnastics. “I just wanted to walk. I wanted to use my new abilities to the fullest extent. The first time Zach saw me, he was like, ‘Who is that girl in my house!’

“I just wanted to be free,” she says, with a sage self-awareness only a twelve-year-old who’s lived through such a transformation could tap. “I felt trapped in this little box. I couldn’t do one thing for myself, and now all of a sudden I was able to do all the stuff I could never do before.

“That’s what I wanted every day when I was little – just to be freed from that box,” she says, smiling broadly. “And that’s what I got!”

D.I.Y. Diagnosis

The happy surprise twist in the Beery story came in 2002, when Retta, frustrated that Alexis’ muscles weren’t improving with physical therapy – as they typically should in cerebral palsy patients by age five – came across an 11-year-old article in the Los Angeles Times that described a girl whose condition seemed a mirror-image of Alexis’. In the article – one of hundreds Retta had obtained from World Research Foundation in Sedona – a North Carolina girl was diagnosed with a relatively rare disorder known as Segawa’s dystonia, which was said to mimic cerebral palsy but was easily treatable.

“The one thing I could never figure out was why her abilities diminished during the day,” says Retta, who had by then taken the twins to four different specialists at Barrow Neurological Institute and Phoenix Children’s Hospital. “I would always ask Alexis’ neurologist at Barrow’s, ‘Why is it that when she wakes up in the morning, she can walk, talk, sit up and eat, but by ten-thirty or eleven o’clock she can no longer sit up, swallow or even move her arms?’ And they couldn’t figure that out. But in this article, that was the exact same condition this other little girl had.”

Retta emailed the doctor mentioned in the LA Times piece, Dr. John Fink – then, and still, a director of the Department of Neurology at the University of Michigan in Ann Arbor – and wrangled an appointment for Alexis and Noah.

Fink recalls that at first he believed only Alexis might have Segawa’s, now more commonly called dopa-responsive dystonia, as it is the one type of movement disorder in this category that responds well to the medications levodopa and carbidopa – amino acids that boost the brain’s production of dopamine and are commonly used to reduce shakiness and improve motor movement in Parkinson’s patients.

“When I saw the brother in the beginning, I thought that he was not affected by this – he didn’t show any signs,” says Fink. Earlier MRI scans for Noah, unlike Alexis, had also confirmed some slight damage in his brain’s ventricle area, justifying the cerebral palsy diagnosis, which had only been assumed for Alexis.

As a result, Fink initially prescribed only Alexis to begin daily treatments of Sinemet, a particularly potent brand of L-dopa and carbidopa. The results were dramatically clear within twelve hours of taking the initial quarter-tab dose, Retta says.

“The next morning, she walked to the rental car on her own and fastened her own seat belt – simple things she was unable to do only the night before,” she says. “Joe and I were just amazed!”

Weeks later, when Noah began exhibiting the same movement difficulties Alexis had shown, the family took him back to see Dr. Fink, who still had reservations about prescribing him the same meds. Sinemet is known to cause nausea in patients, and Noah, since birth, had been unable to go a day without spitting up repeatedly.

Somehow, though, the dopa corrected not only Noah’s movement disorders but also stopped the vomiting. To this day, Fink says he can’t offer a concrete explanation as to how it managed to knock out both Noah’s dystonia and cerebral palsy symptoms, not to mention the stomach disorders.

But he credits Retta for her persistence in following her gut feelings, even against the advice of so many well-schooled specialists – who, in this Internet age, have seen far too many soccer moms brandishing WebMD print-outs as a sign they’ve done their homework.

“There’s a public concept today that if we keep persisting we will get an answer and find a treatment – no matter how many doctors say they can’t help,” says Fink. “For the vast majority of individuals, their tenacity runs out before an answer can be found.

“But in this case, because of the mother’s persistence – and only because of the mother’s persistence – she found an answer,” he says. “That doesn’t happen very often.”

Beery, a contented stay-at-home mom whose study room at home includes several hefty volumes of books on both cerebral palsy and dystonia, admits she’s ill-equipped for the role of medical crusader.

“Doctors know so much more than I do,” she says. “Except about this particular thing. Because I’ve lived it. And that’s the one advantage a parent has. Once a doctor puts you in a box, the odds of him re-thinking that diagnosis are pretty slim. But when you live with it every day, you’re constantly looking for that better answer.”

Living under the microscope

Alexis Beery holds her outstretched hand at the kitchen counter, showing off the pills she’s about to take for the third and final time today: one bright yellow Sinemet, chopped in half and then once again, to give her the three-quarter tab dose Retta has deemed optimal for her at this stage.

She holds the pose steady for over forty seconds, as if posing for a photograph, though no one is holding a camera.

“That’s okay, honey, you can take the pills now,” says mom, breaking the slightly unsettling moment. Frozen movement is one of the tell-tale signs of Alexis’ old malady – could she be having a relapse?

“Maybe she thought she was posing for a photo,” offers Dr. Fink when told about the incident. “They’ve both been in the public spotlight for some time.” Fink says he wishes the twins could have been spared the media attention that followed their “Miracle Diagnosis” – the title of a Discovery Health Channel program that charted their story in 2007 and still airs occasionally on both Discovery and The Learning Channel. (TLC is scheduled to air the program yet again on July 2nd).

“It would have been nice to just slip into their house in the middle of the night, fix their condition and be gone,” he says. “Instead, they’ve become kind of celebrities through their illness and treatment. Every time they walk into a store, people say, ‘Oh, you’re the miracle twins!’”

For their part, Alexis and Noah insist they enjoy the attention. After relocating from Arizona to Southern California last year, the nurse at their new school requested the Miracle Diagnosis episode be shown to the entire sixth grade as part of the school’s “Abilities Week” – conveniently coinciding with the twins’ arrival.

“After the school saw it, all the kids in my class were like, ‘Wow, you’re a TV star!’ says Noah, who’s a bit less talkative than his sister. “It did kind of feel like that.”

But the kids both know there’s more to the attention than simple classroom fame.

“I feel good when they air the show because I know people who are going through the same issues will reach out to my mom and maybe find their own answers,” says Alexis. “How many emails have you gotten now, Mom? Two thousand?”

Indeed, spreading the word about dopa-responsive dystonia and encouraging parents to take medical research into their own hands has become a personal mission for both Retta and Joe. After a long, successful run in the corporate information technologies field, first as an IT chief at Motorola and later as the CIO of America West/US Airways, Joe Beery left the airline last September to take over global IT operations for the Carlsbad-based Invitrogen Corporation, a company providing research tools to academia and the biotech fields to aid in disease research and pharmaceutical discoveries.

Retta, meanwhile, has been scheduling speaking engagements and operating a website, thebeerys.com, to educate others on the little-known condition and its oft-misdiagnosed symptoms, and maybe lead them to their own medical miracles.

“If I can just get to a few people who might have this and not know about it,” she says, “I’ll feel I’ve done something really important.”

No longer intimidated by doctors, Retta says she recently followed a specialist down a hospital corridor after she overheard him wrongly identify another patient’s symptoms that clearly sounded to her like dystonia.

“At first he said, ‘Who are you?’ – but then he started to listen to me,” she says. Retta claims Alexis’ and Noah’s new neurologist in California, a woman who suffers from mild cerebral palsy herself, has even begun taking Sinemet, too, upon Beery’s advice – and reports it’s been relieving the spasticity in her legs.

About the only drawback to all the attention, the twins say, is that people tend to stare at them a little too long, as if checking to see if they’re still acting normal. Alexis admits that for a while, even she had doubts as to whether or not the cure would hold.

“At first, when I started walking, I was nervous that it wouldn’t last,” she says. “Because I really wanted this change to be permanent. When I got into sports, I didn’t care about the competition. I just wanted to do everything I could do before the abilities went away.”

Now into their seventh year of steady results on the medication (they’ll need to continue taking it daily all their lives), the twins and their family have finally begun to relax about the future. Living in what Alexis calls “a mansion – if you run up and down the hallway ten times, that’s probably equal to a mile!”, and located a quick twelve-minute drive from the ocean, where they both intend to give surfing a try, the Beery twins are clearly living a charmed life – at last.

“Of course, they’ll always need to be monitored, and they’ll have to take medicine on a life-long basis,” says Dr. Fink.

“But personally, I wouldn’t put them under a microscope anymore,” he adds. “To me, their period of intense scrutiny has passed. They’re doing fine. They’re stable. I think we can finally stop watching them, and just let them enjoy being normal kids.”