Date: Monday, Dec. 4, 2000
Great lengths and distances become meaningless in the quest for an Adeli suit. A glimmer of hope in the treatment for cerebral palsy has come from outer space in the form of the Adeli space suit. It is just one of the revolutionary therapies offered by the Euromed Rehabilition Center, located in Mielno, Poland.
In April, Brittany Kraus, 3, who was born with Cerebral Palsy, will travel to Mielno with her mother, Annene Kraus. Distance and logistics aren't the only obstacle. It costs $10,000 for Brittany and her mother to make the trip to Poland. Since this includes the therapy, the cost is moderate by United States standards. It does add up, though, especially since it will take several treatments to obtain maximum benefits. The program is not available in the United States.
A spaghetti feed fundraiser is being held on Saturday, Dec. 9 from 6 to 9 p.m. at the Mother Lode Lions Hall, 4701 Missouri Flat Road in Diamond Springs, to help with expenses. The suggested donation is $5 per person, which includes all the trimmings. In addition to the dinner, there will be a silent auction, a live auction and a prize drawing.
"Every day we're adding more prize items. There are so many wonderful things. Everyone has been so marvelous and generous," said Dave Kraus, Brittany's father.
As Brittany and Annene fly to Poland and toward hope, they will leave behind Brittany's twin sister Ashley, 3, and husband and father Dave at home in El Dorado County.
Another local resident, who has Cerebral Palsy, Michael Porrazzo has gone to Euromed Rehabilitation Services three times already and can now walk. He also is showing improvement in all areas of muscle control. The Porrazzo family has been instrumental in informing the public about the innovative treatment offered by Euromed Rehabilitation Services. In fact, it was at an informational session hosted by the Porrazzo family that the Kraus family found out about the treatment.
Freedom to move
Cerebral Palsy affects motor skills. Other areas of the brain can be totally functional, but when one tiny portion doesn't operate, it condemns one to a life without control of voluntary movement. Often it is a life of being strapped in, of being unable to crawl, walk or even grasp a fork. It can be a life of imprisonment. Trapped by the body, an active, even ingenious mind can flounder, hidden by the chains of paralysis.
Brittany, though, is lucky. "We were very fortunate. We learned right away that Brittany had cerebral palsy. Some people don't know until the baby is seven or eight months old," said Kraus. A CAT scan and an MRI the day after Brittany's birth confirmed the diagnosis. Her fraternal twin, Ashley, was born without any problems. Apparently sometime during the birthing process, Brittany's oxygen supply was cut off. Without the oxygen, the part of the brain that dictates muscle control was paralyzed.
Brittany has been going to Occupational Therapy several times a week since she was a baby, and is now able to attend preschool for "Special Needs" children.
"Compared to many kids with cerebral palsy, Brittany is doing great!," said Kraus. "But that is because we caught it early enough. We were also very blessed that Euromed accepted Brittany. They can only treat 25 American children per month, so they are very selective."
The Euromed program consists of body control, limb control, music therapy, massages, crawling, walking and verbal communication. It was originally developed to rehabilitate Russian cosmonauts who had lost strength, muscle coordination and mobility during their years in outer space. Living without gravity and being weightless took its toll on both physical and mental functions. The Adeli space suit, developed for the cosmonauts, has been adapted for use for children with cerebral palsy.
One thousand and eighty children with cerebral palsy have gone through the program. According to Euromed's statistics, all have seen improvement. Brittany's doctors encourage the endeavor also.
"Euromed's goal is to provide independence for those with cerebral palsy. Just to be able to walk, talk and feed themselves is a boon for kids with cerebral palsy and their families," said Kraus.
Perhaps the person most affected will be Ashley, who will miss her sister. Dave Kraus will miss his wife and daughter, but he understands the necessity for the sacrifices.
"People have been so wonderful and so supportive," Kraus said. "We can't tell you how much we appreciate it. And we really hope that everyone can come to the spaghetti feed. I also hope that our experiences will help other people. Not that many people know about the therapy. We were so blessed that Michael's grandmother in Phoenix saw it on television."
All the money spent on missions to the moon, like the cost of trips to Poland, could be well worth it. When the quality of life hangs in the balance, the Adeli suit -- created to counteract weightlessness -- far outweighs gold.
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