STATE NEWS
Aledo girl with rare brain disease gets crowning moment at Disney
07:16 AM CDT on Monday, April 7, 2008
Jessie Hall has hundreds of friends, her own blog and a disease curable only by removing half of her brain.
For a few days this week, the Aledo kindergartner won't have to think about seizures, medications or her upcoming surgery.
Thanks to big wishes – her own and those granted by a benefactor – Jessie is going to Disney World to dine with Cinderella.
The Make-A-Wish Foundation is whisking the 6-year-old off for a special vacation.
Friends and family celebrated her big week with a pizza party Sunday in Fort Worth.
And, on Friday, her schoolmates at Stuard Elementary School in Aledo – west of Fort Worth – dressed in pink, her favorite color.
"We wanted to honor her," said Robin Seay, the school's principal. "The kids are taking this in a very positive stride. We really wanted to be there for Jessie."
Jessie suffers from Rasmussen's encephalitis, a rare brain disease. She suffers constant seizures, has lost the use of her left arm and will probably lose her vision, said her father, Cris.
"She is ambulatory. She still walks and runs. She still plays T-ball," Mr. Hall said. "We want her to feel as normal as possible."
Jessie is not only fighting an illness that threatens her life. She is undergoing surgery that is very serious but gives her a good chance of recovery.
"We refuse to accept anything except the best scenario," her father said.
Her three brothers – 9-year-old Matt and 8-year-old twins Jake and Josh – are supportive, too, but wearing pink to school on Friday was a hard sell for the twins.
"Matt will do anything for his sister, but the twins needed a little prodding," Mr. Hall said.
Jessie's brothers subtly pushed for a vacation in Orlando, he said. A trip to Disney World was not her first choice. She yielded simpler wishes like a chocolate doughnut with sprinkles, or paper and markers.
"Hey, she's only 6," Mr. Hall said.
Eight months ago, Mr. Hall and his wife, Kristi, learned their daughter had the brain disorder.
Since then, Jessie has been in and out of hospitals and is expected to undergo a hemispherectomy later this year at Johns Hopkins Hospital in Baltimore.
"We've had a crash course in neurology," her father said. "It's a progressive disease that basically keeps eating away at the right side of the brain."
The disease has affected Jessie's motor skills. Her left hand and arm twitches constantly, Mr. Hall said.
Post-surgery could be a bit challenging, he said.
If all goes well, Jessie will awake from surgery with the left side of her body paralyzed for about five days, he said.
Then she'll go to a rehabilitation center.
"Those three weeks are the most important in getting her to walk again," Mr. Hall said.
"Her smile ... she may not get a straight smile back," he said. "But we are optimistic."
For now, the family wants to embrace the good times, the parties, and thank their well-wishers.
"The community support is amazing," Mr. Hall said. "We couldn't make it through without our community and the school and our family and our employers. I can't imagine doing this alone. We are so blessed to have friends to help us through this difficult time."
Contributions to the Hall family can be made to Jessica Kelley Hall, Unity One Federal Credit Union, 6701 Burlington Blvd., Fort Worth, TX, 76131.
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