Friday, June 04, 2010

TOP STORY > >Boy’s brain disease straps Ward family

Leader staff writer
Twelve-year-old R.J. Roe of Ward was becoming something of a discipline problem. At spring break, he was moved from his regular classroom at Cabot Middle School South to one at the Alternative Learning Environment school. But there was nothing in his behavior that was really alarming until he began having trouble with speech and balance.

On May 6, he went to the doctor for an MRI to find out what the problem was. Back home by 1 p.m., he became unable to control his bodily functions.

His mother, Tonya Ballou, attributed the problem to the drug he was given to relax him for the test and put him to bed. And that was the last time his life has been even close to normal.

“I went in Friday morning to wake him up and everything was gone,” his mother said.

He couldn’t talk or walk or control his bowels and bladder.

At Arkansas Children’s Hospital, an EEG showed he’s had no seizures but did show a decrease in brain activity. A CT scan showed R.J.’s brain was deteriorating and a special MRI showed that the size of his brain was shrinking.

Specialists from India, Germany and the United Kingdom were consulted, but no one could tell the family what was happening to R.J. and no one knew how to treat his condition.

On his seventh day in the hospital, his aunt sent her priest to visit him. The priest prayed and anointed him with oil and the next morning he was able to speak again and had limited control of his arms and legs.

“I always believed in God, but from that point, I started believing in miracles,” his mother said.

On the 16th day, Ballou said she told the doctors she was taking her son home. They didn’t know what was causing his brain to die, so they couldn’t tell her how long he might live, she said. And there was no way she would allow him to spend what might be his last days in a hospital room.

Although she hasn’t regretted that decision, Ballou, a certified nursing assistant, had to quit her job to become her son’s full-time nurse and the family income, which supports four children, has taken a hard hit.

She can’t afford the jersey knit shorts and pants her son needs to making caring for him easier. She can’t buy the treadmill that might make his legs stronger or the running shoes he would need to walk on it. And she can’t give him the Nintendo DS he wants that would occupy his time now that he spends most of it in bed.

Outings, such as appointments with the doctor, are difficult because the family’s home doesn’t have a wheelchair ramp and attempts to get help building one have been unsuccessful. Ballou said she would appreciate donations of any of the needed items.

Although she is grateful now for every day she has with her son, the sadness in her voice when she talks about some of the things he has missed is palpable.

“He’s never been on vacation,” she said. “He’s never been to Disneyland or Sea World or Branson. The only place we’ve been able to take him is the Little Rock zoo.”

Ballou said what she has learned in the past month is that everyday life is a precious gift. “I tell everybody now that I run into, ‘Don’t take life for granted because everything can be taken away in the blink of an eye.’”

“We took everything for granted and literally overnight our whole lives were ripped apart. Now we pray every night that he wakes up in the morning and when he does we thank God for another day.”

To raise cash to offset Ballew’s lost wages, Kami Skelton, a friend who works at the Applebee’s restaurant on Warden Road in North Little Rock contacted the corporate office and Applebee’s is hosting a pancake breakfast fundraiser from 7:30 to 10 a.m. Saturday, June 12.

Ballou asks that tickets be purchased in advance if possible so the restaurant will know how much food to have on hand.

For ticket information, call Ballew at 501-606-6335 or Skelton at 501-838-0636.

R.J. wears size 14-16 boys in pants and men’s 7.5 shoes.