'I choose not to place 'DIS' in my ability': School celebrates kindergartner's birthday

News-DemocratMay 10, 2013 

Kindergartner Cordell Jackson celebrated his sixth birthday Friday surrounded by classmates, teachers and family members at Whiteside Elementary School in Belleville.

Cordell suffers from Dravet syndrome, a rare neurological disorder that causes him to have seizures. In celebration of Cordell's birthday and to bring awareness to Dravet syndrome, his teachers, other faculty members and fellow students wore purple T-shirts in his honor. The shirts read "I wear purple for Cordell to bring awareness to Dravet syndrome" on the front, and "I choose not to place 'DIS' in my ability" on the back.

Cordell's mother, Sabrina Jackson, said Cordell's condition is "so rare" they do whatever they can to bring awareness to it. The T-shirt sales also help raise money to help cover Cordell's medical expenses.

Cordell's service dog-in-training, Chloe, a Labradoodle, made a special visit to the school for Cordell's birthday.

Cordell, Chloe, his parents Sabrina and Brian, brother Ashton and others wearing the purple shirts gathered for a group photo in the school's multipurpose room Friday. Cordell received a lot of hugs and birthday wishes from staff and students at Whiteside.

"It's amazing," Sabrina Jackson said. "The support is overwhelming."

"It's nice to see the school come together," Brian Jackson said.

Cordell's brother Ashton is a third-grade student at Whiteside. His two other siblings Tyra, 16, and Donovan, 12, were not able to attend his school celebration Friday. Tyra attends Belleville East, and Donovan goes to Whiteside Middle School. The family lives in Shiloh.

Cordell's special education teacher Lauren Etling described Cordell as a "lovable, energetic, happy boy who will always bring a smile to your face."

Etling said Cordell does a lot of quirky things including fake sneezing and saying, "Bless you," and asking, "You OK?

"Everyone loves Cordell," she said.

She also said Cordell loves rest time at school when he gets to curl up with his bean bag and a blanket.

Cordell is a very active boy, said his father, Brian Jackson. He likes playing basketball, stacking plates and hitting a ball with a bat.

Caring for Cordell can be trying for his parents. "It's exhausting," Sabrina Jackson said. "It's challenging."

Dravet syndrome is incurable, and Sabrina Jackson said most children start to decline in health at around age 12. In addition, individuals with Dravet syndrome face a higher incidence of sudden unexplained death in epilepsy.

For Cordell, Sabrina Jackson said the seizures started when he was 4 months old, and it wasn't until he was 1 1/2 years old that he was diagnosed with Dravet syndrome.

Sabrina Jackson is working to train Chloe to be a service dog in conjunction with Noelle's Dogs Four Hope in Colorado.

"We want to train Chloe to help with responding to Cordell's seizures," Sabrina Jackson explained. "We want her to sense it before it happens. They (service dogs) can usually sense it one to five hours out so we can be ready."

Cordell's seizures are sporadic.

"He can go a week or two with nothing and then have multiple seizures in one day," Sabrina Jackson said.

Cordell is "happy all the time" and has no problems bouncing back after a seizure, Sabrina Jackson said. "I don't know how he does it," she said. "He doesn't let it bring him down."

In February 2011, Cordell almost lost his life after going into renal failure and was in a coma for 1 1/2 weeks, Sabrina Jackson said.

"He's a fighter, and he doesn't know it," Brian Jackson said.

Every year, the family participates in the national epilepsy walk in Washington D.C., which was held in April this year. In October, she said they will participate in a walk in Arnold, Mo., to bring awareness to Dravet syndrome.

In addition to selling T-shirts, the Jackson family also sells bracelets that say, "We will conquer Dravet syndrome for Cordell."

Contact reporter Jamie Forsythe at 618-239-2562 or jforsythe1@bnd.com.

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