Palisade 8-year-old, dad have same rare condition

Tim Gray of Palisade was diagnosed with the rare brain condition Chiari Malformation seven years ago when he was living in Oregon.

On Nov. 30, 2012, his son, 8-year-old Zane Gray, was diagnosed with the same condition.

Chiari is not strictly passed on through genetics but researchers have found a hereditary link in some families, according to the American Syringomyelia & Chiari Alliance Project. The cerebellum, located at the bottom of the brain near the back of the head, dips lower than normal and presses on the spinal cord and the brain in a person with Chiari Malformation. Relieving the pressure requires surgery. Tim Gray had that surgery in 2005. His son is scheduled for surgery Friday at Children’s Hospital in Aurora.

Once a person shows symptoms of Chiari Malformation, surgery become a necessity, according to Zane’s mother and Tim’s wife, AprilRose Gray. Symptoms are wide-ranging, but in her family they included horrible headaches brought on by actions as simple as a cough or a sneeze. Gray said her husband also had numbness and tingling in his feet. Other common symptoms include extreme neck and shoulder pain; loss of motor control or balance; arm and leg weakness, stiffness or pain; loss of bladder and bowel control; trouble swallowing or speaking; and respiratory problems and sleep apnea, according to ConquerChiari.org, a site run by the nonprofit C&S Patient Education Foundation.

Zane, a student at Taylor Elementary, has central apnea, according to his mom. He had his tonsils taken out in an effort to alleviate his symptoms, but it didn’t help. This fall, he went through a sleep study, an Electroencephalography exam and a magnetic resonance imaging exam. The MRI is what detected Chiari Malformation.

“We were heartbroken because of what my husband went through,” AprilRose Gray said. “The surgery is very risky. Lots of complications can come with it. Chemical meningitis is common with it and he could have a drain leak where it takes several surgeries (to fix).”

Gray said her son should be out of the hospital within a week of surgery if all goes well. But her husband, who developed meningitis after surgery, spent two months in the hospital.

Gray said she wants to tell people about Chiari Malformation so they will know they are not alone if they have it or know someone who has it. Anyone with well wishes for Zane or who wants to connect about Chiari can contact the family at .(JavaScript must be enabled to view this email address).

Anyone who would like to donate to help the Grays with medical expenses can donate to the Zane Gray Chiari Fund at any US Bank branch.


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