Despite son's medical problems, family never gives up

Looking for hope   BY KATHERINE L. BRYANT Staff Writer

When many families discover they're going to have a baby, they are thrilled and excited with what the precious new bundle of joy will bring - especially if the pregnancy seems normal.

But what if it isn't normal?

The Roberson know what they do and are currently searching out the best care for their child: not the best school to send him to, the best neighborhood for him to live in, but the best medical care they can find him.

But they need some help.

One little boy has many needs but a special kind of oxygen therapy (hyperbaric) is what his family said could make all the difference in the world for their son.

The Robersons said the oxygen therapy is relatively new and only became aware of the treatment not through a doctor but at a symposium about medical care.

Austin Roberson was born full-term at 8 pounds and 8 ounces with what appeared to be a normal pregnancy. Now at 4 years old, he has a form of cerebral palsy called spastic quadriplegia palsy.

He has muscle tension throughout his body because his mothers says a portion of his brain is sending a general signal to all parts of his body instead of specific signals to targeted areas of the body controlling the motor skills so many of us don't even think about. To be able to pick something up or raise a hand to ask a question or look at a butterfly are day-to-day things that many can take for granted because the brain sends out the appropriate signals to the specific muscles needed to perform these day-to-day movements.

Other problems for Austin do to lack of muscle control through the brain include the inability to speak words or sit up well.

"Austin wants so much to do things independently," mother Francie Roberson said.

The palsy was not noticed at first because the physician seeing the child did not recognize the symptoms or signs, perhaps due to lack of experience with these type of cases.

Francie Roberson, 33, of Williamsburg said the family decided to try another doctor after they became more and more concerned with his behavior. Austin was a year old when the palsy was finally diagnosed.

"The doctor we were seeing said kids developed at different stages and that it wasn't fair to compare Austin with other kids," Francie Roberson said.

Roberson said Austin was not developing basic motor skills and that was the reason why they kept going to the doctor asking questions with concern. Roberson said by 7 months old, Austin wasn't sitting up or rolling over as could be typically expected by that age.

Roberson said they weren't trying to compare Austin with other children but rather have something to go by to know if there was a problem and what to do about it.

"Austin couldn't snuggle when you held him against you" Roberson said. "He doesn't have muscle control throughout the front area."

Roberson said she and her husband were devastated when they were told their son had palsy because they didn't really know what that meant but they had heard about it.

Roberson said the problem with getting the oxygen therapy for Austin is the fact that the therapy isn't FDA approved for treating palsy so the insurance companies are taking a hands-off approach to the issue. Another problem, she said, is the cost for the therapy isn't government regulated and can be extremely high.

At the symposium, Roberson said, like many parents, she cried when she saw how this therapy helped children who had already had it done. They had varied results but all were good. Some kids ended up with vision they didn't have before, with better motor skills to move around and perform tasks and with the ability of speech when they couldn't talk before.

"It gave us hope," Roberson said.

Roberson said they have to Bethesda, Fla. to get the therapy at the lowest rate. They will stay in the Ronald McDonald House for $10 per day and need to find transportation for a wheelchair.

Roberson said the treatments plus other therapy must be done twice a day for 40 days; then the therapy is stopped for a month so the child will not develop toxicity.

Roberson has a Austin Roberson Medical Trust for donation to cover the medical costs for his first set of treatments. Roberson said if she can get her son to Florida in October, the cost could be $4,000 instead of $8,000 because the treatment facility is offering to do the therapy for half the regular cost.

Roberson said the different degree of results means the doctors can't determine how much this therapy would help Austin until it is done.

"We are looking for any way to help him get the independence he so desires," Roberson said.

For more information on how you can help, call Francie Roberson at xxx-xxxx or Nancy at the Community Trust Bank at 549-5000.

This article was featured on the front page of the Times-Tribune our hometown paper on Friday, October 1, 1999.

KidFest '99 The Bell-Whitley HeadStart Program recently hosted its KidFest '99 at Whitley County High School. The many activities offered by KidFest '99 included bingo, an art corner, a reading corner, fish pond, free haircuts, face painting, ring toss, vision screenings, cake walk, free goodie bags, and a free lunch. A clown was also there, handing out balloons to all the children. Right, Austin Roberson is 4 years old and has spastic quadriplegia Cerebral Palsy. he is in need of special treatment, but it is expensive and is not covered by insurance. If you would like to make a donation to help out, please call Nancy at Community Trust Bank, 549-5000 to get more details.

This article ran in our Whitley County District Ed. News, VOL. 9, NUMBER 3 in October 1999.