By Nicole Lemal
Times West Virginian
Bubbly and cheerful, 6-year-old Craig Gilpatrick comes across as a normal young boy.
Superheroes and cars are his favorites, and he enjoys attending church services with his family.
But those who know anything about Gilpatrick beyond that know there is far more to this story.
In his first six years of life, Gilpatrick has undergone 19 operations. Diagnosed with Arnold-Chiari malformation, a brain malformation, he often suffers from severe migraines and has trouble with his hearing and sight, and now uncontrolled epilepsy.
It has been especially trying for his mother Tara. She was the first of many members in her family to be diagnosed with the condition.
“It affects you pretty bad,” she said. “You never know if you’re going to have a migraine. You have a lot of choking spells. Even your saliva you will choke on, and that’s scary. Even though I have it, it plays a bigger toll on me for my son to have it than me to have it, which I think any mother would feel.”
Years of procedures and numerous medical bills have exhausted the family not only mentally, but financially. And for the first time over the span of the young boy’s ordeal, they are reaching out to the community.
On Sunday, a day after Gilpatrick’s seventh birthday, the family will have a benefit dinner and country music show at the Mountain View Jamboree Building. Seven miles from Greenbag Road on Kingwood Pike in Morgantown, the venue will be the site of a spaghetti dinner starting at noon for $5. Hot dogs will be provided for the kids as well, along with numerous desserts and beverages for the crowd.
Admission for the music show, which will begin at 1 p.m., will be $5. Performers include Mountain View Outlaw Band, Rockin’ Al Anderson, John Daugherty, Robbie Comas, Tom Goldsmith and Ed Queen.
Immense support from her fiance Randy Beall and her mother Sally Andrews has been a blessing for Tara, who wants the best for her son. Hoping for a large turnout and huge support system, she is also on a mission to accomplish another goal.
“It’s not only about the medical bills, but also the awareness,” she said. “There are just too many times you go to the hospitals and doctors don’t know what Arnold-Chiari malformation is. They need to get it out there and make them aware.”
When the family learned Gilpatrick had the condition, they had no choice. Immediate emergency surgery was performed because the malformation was so severe.
The disease, which has taken a toll on her son, is one of many medical ordeals he is facing. While in New Mexico, Gilpatrick was flown to a hospital due to the severe seizures he was having. As a result of the seizures, he suffered mini-strokes and could not walk. Doctors predicted he would spend at least three months and possibly a lifetime in a wheelchair.
“Me and my mother both fought it,” Tara said. “They had him out of the wheelchair. He is now walking, running, but there have been times that he does need his wheelchair because his legs hurt so bad that he can’t walk on them.”
To add to the stressful ordeal, Gilpatrick is now without a wheelchair due to a fire.
“When he is having a bad day, we are now at the point where he is to be carried around,” Tara said.
She and her family have done everything they can to make Gilpatrick’s life as normal as possible in spite of the endless doctors’ visits and procedures that have been performed. The family is especially grateful for his neurologist, Dr. Felix Brizuella, who has been instrumental in helping Gilpatrick achieve more normalcy in his everyday life.
“(Dr. Brizuella) has been achieving much success in getting Craig to the point where he can live a more normal life than what most doctors have felt he could ever live,” Tara said. “Craig is looking to be getting another operation around the first part of 2013.”
More medical procedures are planned in the future, and a battle to attain as normal of a life as possible will be exhausting.
But when Tara looks at her son, she is proud of the strength he exudes and the cheerfulness he portrays.
“He has been a true fighter with all his medical problems,” she said.
Donations for the silent auction and more would be greatly appreciated by the family. To purchase $10 cash bash tickets or for more information, call Tara Gilpatrick at 304-841-3612.
Email Nicole Lemal at email@example.com.