Sara’s Garden Now Offers Additional Therapy

It is so hard to believe that July is nearly over. This has been an exciting month here at Sara’s Garden!

The 2014 summer camp got off to an exciting start on July 7th. A total of 38 students from 9 states across the country arrived with their parents in anticipation of many positive gains. The children were able to participate in one of three programs or a combination of the three programs. Families are offered Autism Interventions, Sensory Integration, and Conductive Education services. Some families also choose to take part in Hyperbaric Oxygen Therapy treatments.

This amounts to a long, full day for these little warriors. They are working so hard!

The children have faced new challenges and high expectations. Along with new challenges and high expectations come struggles for these children. Needless to say, the first few days were difficult for them, but by the end of the first week we were already seeing significant changes and gains. The children began to trust the teachers, aides, and conductors and appeared to realize that these people really will help them to reach their independent potential.

Thus, we have children who are taking steps for the first time, increasing head control or sitting independently. One child walked with a walker by herself for the first time in her life. Another student took 50 steps without support from anyone. There has been less stemming, better focus, and the ability of some students to control negative behaviors.

Another significant component of this year’s camp has been the positive relationship building which is taking place between students. Friendships are being established which is huge for our students and parents. Without a doubt, the first half of summer camp has been so uplifting for all of us.

We can’t wait to see what the children are able to accomplish by the end of camp on August 1st.

Mind And Muscle

Article published May 13, 2005 5:51pm ET by CBS

Blaine Mayo is an 8-year-old boy with a wonderful smile, but he’s a boy who cannot walk, stand or use his arms. Blaine was born with cerebral palsy.

In America, about 8,000 children are born with cerebral palsy each year. Their brains are damaged at birth, usually because of a temporary lack of oxygen. Cerebral palsy breaks the connection between mind and muscle.

Most often, children with cerebral palsy, like Blaine, settle into wheelchairs for the rest of their lives. But, as Correspondent Scott Pelley reported this winter, Blaine’s parents are doing something extraordinary.

They’ve moved half a world away to a place where wheelchairs lie motionless and children with cerebral palsy rise. They believe Blaine will walk. And they’ve rejected the advice offered by their American doctors.

“It’s basically, ‘Let’s sit him in a chair. Let’s strap him up. And let’s adapt everything around him so that he doesn’t have to work very hard,’” says Blaine’s mother, Lesley. “Which is all well and good. Except then you end up with a child that can sit in a wheelchair and can’t do anything for himself.”

Blaine was born with one of the most severe forms of cerebral palsy. He has almost no control of his legs, his arms, even his jaw. At 4, he was unable to eat or even sit up by himself.

Lesley says that doctors told her Blaine would probably never walk on his own: “Never. Not functionally. So there was no point in trying. But over here, of course, the first thing they mentioned was this child can walk.”

The Peto Institute is in Budapest, Hungary – 5,000 miles from the Mayos’ home in Alabama. Lesley and her father, Robert Dillard, who took an early retirement, are here with Blaine. Blaine’s father stayed behind to work.

They don’t have jobs here, and they don’t speak the language. But they see no other alternative. “Either you stay at home and you accept less for your son, or you bite the bullet and ask to raise money and bring yourself over here,” says Lesley.

Blaine is able to work at something, developed at the Peto Institute, called conductive education. The teachers (called conductors) show the children how to move, and for eight hours a day, five days a week, they repeat the routines to near exhaustion.

The idea is this: If the brain is forced to try, it will find a way to connect mind and muscle.

Right now, Blaine is trying to learn to walk. Holding himself up on a ladderback chair, he’s pushing with his eyes on the prize. His mom is 40 feet away. The muscles he can control are all in his face. And everything about his struggle is written there.

While other American moms are cheering at soccer games, Lesley is beaming encouragement to get her son another fraction of an inch. His foot on the right side of the screen is lifting, and he’s pulling the heel up — the beginning of a step.

All he has to do is push with the ball of his foot. But he’s caught in the middle. Finishing the step takes more strength than he has.

In the early days, did Lesley have any second thoughts? “Yeah, the first week,” says Lesley. “It’s funny though. You care for your child and you don’t want to see your child go through that, but you’ve seen how the other children have come out the other side. So at that point, if you want the honest truth, you’re going, ‘Gosh, I wish he could do this, and I wouldn’t have to watch.’”

Parents like Lesley have been watching their children in the Peto Institute for nearly 60 years. Americans haven’t heard about it because most of its time it was hidden in the shadow of the Iron Curtain.

Just after World War II, a Hungarian doctor by the name of Andras Peto decided to challenge cerebral palsy to a fight over every kid who was destined for a wheelchair. Peto thought that just because a child was born with brain damage, it didn’t necessarily mean that he was incapable of learning skills that might lead to an independent life.

Today, 1,500 children are there from all over the world. The institute takes in any child under the age of 3 and older kids without severe learning disabilities. Training costs $60 a day for kids who travel there to enroll for months at a time. Results take years, but kids help each other with skills and maybe a little encouragement.

Jill Anderson traveled to the Peto Institute from England when she realized her infant daughter, Olivia, wasn’t able to move like other children.

Olivia has been there for nearly two years, and she can sit up, crawl and stand. “She actually took her first steps last week here, 10 steps on her own,” says Jill. “It was a very emotional time.”

It’s the intensity of the Peto approach that makes it different from other therapies. Back in the United States, kids may get occupational or physical therapy. But most often, it’s only for an hour or two a week. Parents are expected to follow up at home.

But at the Peto Institute, conductors, who have been trained in this program for years, spend 40 hours a week with the children.

Ildiko Kozma, director of the Peto Institute, makes an extraordinary claim of success for kids who start the program before they’re 3 years old: “Between the ages of six months and 3-4 years of age, 80 percent of these children will go to a normal elementary school.”

“They won’t be dancers, they won’t be people whose first activity is moving, but they will live a normal, average human life,” says Kozma.

Normal, average life is possible for many because half of all kids with cerebral palsy have a normal intellect, so they can learn like any other child. It’s only the muscles that fail them.

Most of the time, it’s hard work on hard wood for these kids. A group of six-month olds may be ready for a nap, but instead, they’re working on a table called a plinth. Peto modeled it on a Nazi concentration camp bunk with little cushion or comfort. The idea is to force a child like Blaine to feel the movement — a controlled and constructive use of pain.

“He [Blaine] has bruises. All the kids have them and they laugh about them, because they’ve been working so hard,” says Blaine’s mother, Lesley.

“It’s a hard surface, and I know it’s difficult on him, but it makes him want to do the exercises quicker and get off of there. It makes him want to do them right so he’s finished with it. Everything they’re doing on the plinth is strength and flexibility, which he needs both of.”

Blaine’s been there six months, and he’s been working along side a 14-year-old American girl named Havia Quereshi, whose family immigrated to North Carolina from Pakistan.

Havia’s legs are every bit as impaired as Blaine’s. At 4, Havia was unable to walk, and unable to lift her shoulders off the couch. Her father, Amir, says the American doctors gave her a grave prognosis: “They told me that your child is never sit by herself — her life expectation, 20 to 25 years.”

Amir had been watching his daughter in the Peto Institute for four years, and this year, she’s walking to her seventh-grade classes in public school back in the United States. She has an aide who walks with her from class to class. She has trouble talking, so a lot of her work is done on the computer. But despite all of that, her father told 60 Minutes that Havia is an “A” student.

“Now I can see the light at the end of the tunnel. There is hope that she will become independent,” says Amir. “Maybe it takes two year, or three year. That way, she’s progressing, I can wait few more years that she become independent.”

Parents like Amir, who see children taking impossible steps, are Peto’s greatest believers. But the American medical establishment is skeptical.

Dr. Carolyn Green, who treats kids with cerebral palsy in Cleveland, says there hasn’t been a long-term, independent study of Peto.

“There is literature from there. It’s very positive. It’s almost suspiciously positive. And I don’t mean that they are falsifying data. That’s not what I mean at all,” says Green.

“It feels too good to be true when you look at it. When I look at that question a little bit more, because I have seen it with my own eyes, and it is effective, it is wonderful. I probably wouldn’t use as strong positive descriptions as I’ve seen some of the literature that comes from its home country.”

But what Green is seeing is the development of conductive education in America. There are now programs in 20 states. A few of Green’s patients are enrolled at the United Cerebral Palsy Wolstein Center in Cleveland. They’re working with Peto-trained “conductors” from Budapest 15 hours a week — not because their doctors prescribed it, but because their parents demanded it.

But parents like Lesley Mayo, who have been frustrated by limits set in America, are finding hope in Budapest.

“I don’t think they see limits. They give you time frames. I mean, they do. They said in two or three years, your child will walk,” says Lesley Mayo. “And I totally believe that.”

Center Offers Alternative Therapy for Victims of Brain Injuries

Article published Monday, April 4, 2005 by the Toledo Blade

Sara Burkholder’s death had the makings of a lawsuit.

The athletic, 25-year-old English teacher died of internal bleeding during the birth of her first child. Amniotic fluid flowed into her bloodstream, robbing her blood of its ability to clot. The traumatic birth left her son, Jackson, now 3, with cerebral palsy. He cannot talk. He cannot walk.

Yet instead of going to court, her family – the Burkholders and the Rycheners – went to churches and community groups with a dream. They would create a nonprofit, alternative medical center in Fulton County to offer a treatment they believe is helping Jackson.

This morning that dream comes true with a ribbon cutting for Sara’s Garden in Wauseon, where children and adults suffering from brain injuries can receive treatments called hyperbaric oxygen therapy.

But the therapy, which supplies pure oxygen to people during a simulated deep-sea dive, is unproven for neurological treatment in the eyes of medical experts, said Don Chandler, executive director of the Undersea and Hyperbaric Medical Society, the premier medical association for hyperbaric therapy.

“We’ve always been very cautious. It’s still looked on as experimental, and we don’t have enough scientific evidence,” Mr. Chandler said.

There is scant published research addressing the use of increased atmospheric pressure to treat strokes, cerebral palsy, and similar injuries.

In fact, research supports the use of hyperbaric chambers in only a few areas, including wound care, carbon monoxide poisoning, therapy for the bends in divers, and treatment of tissue damaged by radiation therapy.

But don’t make that argument with Judy Burkholder, a registered nurse and Jackson’s paternal grandmother. Medicine is full of treatments with doubtful benefit to patients, she says.

She points out that insurance and other assistance will pay for only short bouts of physical therapy for Jackson. “I would challenge you to find any studies that prove that occupational and physical therapy for 20 minutes a week will make a difference in my child,” she said. Yet hyperbaric oxygen therapy brought profound improvements in her grandson’s life, she said.

“He was a year old, and he could do nothing. If you stood him up in a toddling position, he couldn’t lift his legs. He was falling off the growth chart. A neurologist told us he would probably be mentally retarded and need a feeding tube, orthotics, lifts, wheelchairs, all these appliances,” she said.

But on his third day of hyperbaric treatment, his lagging appetite surged. The 1-year-old ate three meals that day instead of one.

“In nine months, he gained 7 inches and 7 pounds. He’s in the 50th percentile in weight and over 100th percentile in height. Contrary to what the neurologist believed, he is not mentally retarded,” Mrs. Burkholder said.

He cannot speak, but he can touch cards that provide the appropriate responses to questions.

When Jackson began hyperbaric therapy, he could see, but he wasn’t aware. “That has changed. That’s huge,” Mrs. Burkholder said.

“The medical community would say all these things are anecdotal. I would tell them I don’t care. … I’m a nurse. I was very careful when we first went to get treatment, and I documented all the changes that I saw. There was no doubt in my mind the changes that took place could not be attributed to development. Developmental things take time. This happened overnight,” Mrs. Burkholder said.

Despite the confidence organizers of Sara’s Garden have in hyperbaric “dives,” no one is making big promises. Instead, they’re offering hope that maybe, just maybe, this will make a difference for others too.

“In some eyes, it can be experimental,” said Scott Frederick, a Wauseon physician who is medical co-director of Sara’s Garden with Alan Rivera, a physician in West Unity in Williams County. “This is kind of like a new frontier. It may be a possible therapeutic regimen for these people. This is just the beginning.”

Once chamber pressure is increased for the simulated dives, it can be decreased only gradually, so a patient who would have a medical emergency during treatment, such as a seizure, would have to wait until proper pressure is gradually restored.

Patients undergoing this therapy at Sara’s Garden duck into what looks like a big propane tank and take a seat. Air pressure is raised to no more than 29 pounds per square inch – the equivalent of diving to 33 feet – but people in the tank feel nothing more than a little pressure in the ears, like what is experienced in flight. The patient wears a clear plastic hood that looks as if were borrowed from the animated movie character Buzz Lightyear. The helmet, which delivers pure oxygen, is sealed so the oxygen cannot escape into the chamber. Chamber sensors will detect an increase of oxygen above the normal 21 percent level. The chamber depressurizes in the event of an oxygen leak.

Sara’s Garden will charge $100 per dive, a price leaders hope will cover operating expenses. Because treatments can require multiple dives, that $100 adds up quickly. Jackson has dived 96 times.

The Burkholder and Rychener families are not the first to open a nonprofit hyperbaric facility after sending a child for such treatment. “How do you think these places around the country have opened?” asked Paul Harch, who practices hyperbaric medicine in New Orleans. “They’re all over the place, and they’re started by parents.”

In 1970, there were about 30 hyperbaric centers, said Mr. Chandler of the hyperbaric medical society. “Now there are over 500 that we know about, and there are a lot . . . we don’t even know about. We know it’s going on. We refer to it as the cottage industry.”

A study by researchers at the University of Mississippi using rats seemed to suggest promise for hyperbaric therapy. The work, published in the journal Brain Research in 2002, subjected rat pups to oxygen loss. Some of the rats were treated with hyperbaric oxygen therapy after an hour of diminished oxygen. Animals treated with hyperbaric therapy suffered less brain atrophy and cell death, researchers said.

But a study published that same year in the journal Developmental Medicine and Child Neurology provided 40 sessions of hyperbaric oxygen therapy to children diagnosed with cerebral palsy. A second group of children received oxygen therapy at only slightly elevated atmospheric pressure. Children in this Montreal study all showed improvement in attention and working memory, but there was no difference between the children under higher atmospheric pressure and those under only slightly elevated pressure.

But the Burkholder and Rychener families aren’t worried about these debates. They’re busy making Sara’s Garden grow.

The Sara’s Garden board hopes to build a house just east of the 1950s vintage office building that Sara’s Garden occupies on West Leggett Street. This would be called Jackson House and serve as a home for out-of-town families during hyperbaric treatments. The board also hopes to offer other therapeutic services at Sara’s Garden.

But the family’s most profound desire for Sara’s Garden is that it will give glory to God. They feel, they said, that God used Sara Burkholder’s death to call them to help others through Sara’s Garden.

“If Sara hadn’t died, if Jackson didn’t have cerebral palsy, would we have been motivated to do this?” Judy Burkholder asked.

And if the family had sued the local hospital and used such proceeds to build Sara’s Garden, would that have been an appropriate start to such a mission? The Burkholders say the blessing of community donations is far better than the heartache of a lawsuit – and far more in keeping with the life Sara Burkholder lived.

“Sara would have gladly died and had her child have cerebral palsy if it could bring one person to God,” her husband, Jay, said.