Boy's wish for superhero carnival comes true at Anne Carlsen
Charlie Bannister’s wish of a superhero carnival came true on Friday, June 17, at the Anne Carlsen Center.
JAMESTOWN – Sgt. Bob Schlenvogt with the Jamestown Police Department had a special message for a 9-year-old boy when he gave him a challenge coin, an item that is given to someone considered to be important.
“I can’t think of anyone more deserving of this than you,” he said. “Thank you for inviting us to your party.”
After his wish was postponed for two years because of the coronavirus pandemic, Charlie Bannister’s wish of a superhero carnival came to fruition Friday, June 17, at the Anne Carlsen Center. Make-A-Wish North Dakota held a superhero carnival that day for Charlie, his family and friends that included superhero appearances from “Supergirl,” “Superman” and “Spider-man,” reptiles and a petting zoo from the Red River Zoo in Fargo and carnival activities for prizes.
Law enforcement from the Jamestown Police Department, Stutsman County Sheriff’s Office and the North Dakota Highway Patrol attended the event along with personnel from Ringdahl EMS.
Charlie’s favorite superhero is Captain America, and he is a big reptile fan, said Amanda Lausch, a volunteer with Make-A-Wish North Dakota.
“We also wanted to make this an event where the family can enjoy each other stress free and a celebration of Charlie,” she said.
Charlie was born with migratory partial epilepsy of infancy, said his mother, Jennifer Bannister, who is from Hazen, North Dakota. His brother, Austin, 7, also has migratory partial epilepsy of infancy and rooms with Charlie at the Anne Carlsen Center.
Bannister said the superhero carnival was perfect for Charlie.
“There aren’t a lot of things that he can physically enjoy. I know he loves friends and he loves family and he loves gatherings,” she said.
Charlie’s wish has been delayed for two consecutive summers, said Ruth Wanzek, Anne Carlsen Center’s Central Region vice president. Charlie’s original wish was to attend “Paw Patrol Live!” in Bismarck in 2020 but the coronavirus pandemic put the wish on hold. Since attending “Paw Patrol Live!” was no longer a possibility, Charlie chose to have a superhero carnival instead.
“We did everything we possibly could to make sure it happens this year. Make sure it is safe and fun,” Wanzek said. “ … We wanted to make sure the other kids from his class could be out here with him with all the public here. We certainly worked hard to make sure we could keep them all safe.”
Charlie and his brother were born with migratory partial epilepsy of infancy.
“It’s never been known to happen in siblings,” Bannister said.
Charlie’s father, Jeff Bannister, said genetic tests were done and doctors don’t know how both children got migratory partial epilepsy of infancy or what it is from.
The condition is a severe form of epilepsy that begins very early in life and is rare with approximately 100 cases that have been described in the medical literature, according to MedlinePlus’ website.
The condition is not inherited from a parent and does not run in families, MedlinePlus states. The condition is caused by a new mutation that occurs very early in embryonic development.
Migratory partial epilepsy of infancy involves having seizures that begin before the age of 6 months but commonly start within a few weeks of birth, MedlinePlus states. The seizures don’t respond well to treatment, and affected individuals may develop normally at first, but the progression stalls and skills decline when seizures begin, resulting in affected individuals having profound developmental delay, the website states.
The seizures are described as partial because the seizure activity occurs in regions of the brain rather than affecting the entire brain and can appear in multiple locations in the brain or migrate from one region to another during an episode. The seizures are infrequent at first, but the frequency increases after a few months of seizures starting.
Seizures can affect the growth of the brain and lead to a small head size, and problems with brain development can also cause profound developmental delay and intellectual impairment, MedlinePlus states. Affected infants will often lose the mental and motor skills they developed after birth, and many have weak muscle tone.
Jennifer Bannister said Charlie’s been to many medical appointments. She said his heart has stopped before.
“That was my first time giving CPR. It was terrifying,” she said. “That’s why he came here because I never wanted to do that again.”
She said Charlie needed around-the-clock care so she took care of him while Jeff Bannister worked.
She said doctors gave Charlie a life expectancy of 6 to 8 years old but he’s already turned 9.
“That’s why we call him Captain America,” she said. “He’s the strongest man in the world.”
Charlie’s brother has been in the care of the Anne Carlsen Center for about a year, Wanzek said.
Now, the Anne Carlsen Center staff takes the brothers to all of their medical appointments, and some medical providers come to the Anne Carlsen Center as well.
“They let me know where and when it is, and I can meet them and go to appointments,” Jennifer Bannister said.
If it wasn’t for the Anne Carlsen Center’s care, she said Charlie might not be here.
“I can’t say enough good things about it,” she said.