Walk for Chiari malformation hopes to raise awareness, research funds

Jaxon Eilers wanted to be like his friends.

The 7-year-old Cedar Rapids boy saw neighborhood kids going door-to-door selling magazines and delivering Cub Scout popcorn and wanted to do a fundraiser, too.

His parents have turned his quest into a reality, one with special meaning for Jaxon, who suffers from Chiari malformation, a congenital condition that affects the brain.

Jaxon's Quest for a Cure, an awareness walk for Chiari malformation, will be 10 a.m. Saturday at Noelridge Park.

Besides raising awareness about the disease, the family also hopes to raise money for research.

Surgery is the only treatment available to correct problems or stop damage to the central nervous system resulting from the condition.

“He looks 100 percent normal, besides the 8-inch scar going down the back of his head,” said Jaxon's mother, Rachel Eilers.

The scar is from surgery Jaxon underwent at age 4 at University of Iowa Hospitals and Clinics in Iowa City.

Eilers, 33, was 8-months pregnant with their second child when she and husband Matt, 36, were told Jaxon needed surgery. They were able to wait until son Izak was 5 weeks old, and the entire family stayed in the hospital with Jaxon, she said.

Jaxon was diagnosed at age 2 1/2 after a visit to an eye doctor.

Eilers said the couple noticed Jaxon's eyes were crossing. Their doctor referred Jaxon to UI Hospitals, where an MRI showed the Chiari malformation - structural defects in the cerebellum.

Because that part of the brain controls balance, patients can have problems with coordination.

Jaxon has related conditions, including scoliosis, a curvature of the spine, and syringomyelia, a chronic progressive disease of the spinal cord.

Eilers said that hasn't kept her son down. He likes to ride bikes and play with neighborhood children.

He is being home-schooled as a first grader, in part, because his vision problems made preschool and kindergarten frustrating for him.

Jaxon also has to have regular doctor's visits, which have piqued his interest in science and chemistry.

He often asks what equipment doctors are using during his exams and hopes to sometime become a doctor or an inventor.

Dr. Arnold Menezes, Jaxon's doctor, is world-renowned as an expert on Chiari malfunction.

Eilers said a member of a family from South Africa was receiving care during the same time Jaxon had his surgery.

It was more than fortunate that Jaxon was referred to UI Hospitals, Eilers said, adding that she hoped her son would continue his progress under Menezes.

“It was not just a coincidence,” she said. “It was a blessing, a huge blessing; a miracle, in fact.”

Awareness walk

• What: Jaxon's Quest for a Cure, awareness walk for Chiari malformation
• When: 10 a.m. Saturday
• Where: Noelridge Park
• Cost: $20 a family; $10 an individual; Shirts will be available for preregistration.
• Money raised will go for research and the ASAP Foundation, www.ASAP.org
• Information: Rachel Eilers, (319) 294-9288