It’s Friday afternoon when Joshua Campbell and his family stop at McDonalds for an after-school treat. Enjoying his ice cream, Joshua shrugs when asked about what he did at school that day.
“I don’t remember here,” he said, with a small laugh.
While Joshua looks any other 8-year old, he is different from most children his age. He lives with a rare disease called CSWS Epilepsy, or Landau Kleffner Syndrome. Thomas Campbell, Joshua’s father, said there are only about 1,000 known cases.
Joshua hasn’t let his disease hold him back, and has instead used his diagnosis to work to make a difference in the community.
This year, Joshua said he's most thankful for the CSWS Epilepsy and Landau-Kleffner Syndrome (ESES) Foundation his parents started. He said it has allowed him to raise awareness about the disease and help children like him
“I’ve raised $23,000 for ESES and it’s working really well,” Joshua said.
Thomas Campbell said the money helps doctors at Harvard research ESES and conduct studies on children with the disease. This helps doctors come up with better medicines and treatment for ESES.
“We’ve started a support group as well, and we’ve reached over 700 families around the world,” Thomas Campbell said. “Before the organization, there wasn’t much support (for ESES) if any.”
Vinez Campbell, Joshua’s Mother, said some symptoms of ESES include loss of motor skills and emotional and behavioral difficulties. She said these autism-like symptoms cause children with ESES to be misdiagnosed.
“(Autism) is the first thing they diagnosed Joshua … but we (saw) symptoms of autism coming and going, where sometimes he’s social and sometimes he’s not … autism does not come and go,” Campbell said.
Also, unlike other forms of epilepsy, Campbell said seizures don’t always show with ESES.
“When (ESES) first manifests, you don’t see it. The partial seizure activity goes on in the brain long before you’ll actually see it — if you ever see an actual seizure,” Campbell said.
She added the only way to diagnose the illness was to have Joshua fall asleep during an EKG.
“(Joshua) just happened to fall asleep during an EKG, otherwise we would have not have known … we are so fortunate,” Campbell said.
While the seizures typically go away as a child gets older, Campbell said the neurological impact of them can be permanent.
“Which is why it's so important to get early intervention and treatment,” Campbell said.
With everything her family and son have been through, Vinez Campbell said she’s mostly thankful Joshua has responded so well to treatment.
“It's ironic that you would choose to feature our story for Thanksgiving,” Campbell said. “When Joshua’s physician Dr. Pearl asked our family why we wanted to lead this cause, our response to him was that we are thankful for how well Josh is doing and it just seemed to be the right thing to do.”
Want to help?
To learn more about ESES or to donate, visit cswsepilepsy.org.
Heymann can be reached by phone at 757-298-5828 or on Twitter at @HeymannAmelia.