Never giving up on hope

After surviving thousands of seizures, and a successful surgery, Evan Stauff is doing well. He loves playing in the bathtub.

Coos Bay — Twenty-month-old Evan Stauff survived an 11-hour long hemispherectomy surgery in November 2010. The procedure saved his life.

A hemispherectomy is removal or disconnection of one of the hemispheres of the brain. The surgery stopped thousands of seizures he was experiencing.

Stauff was born Jan. 11, 2010 to David and Kathleen Stauff. The couple met in high school, and are from Payette. The Stauffs moved to the Oregon Coast nine years ago.

The Stauffs have three children, Chandlor, 12, Patrick, 8, and Evan, 20 months.

When he was 3 months old, Evan Stauff had his first seizure.

“It was a devastating experience. There was uncertainty, and we were frustrated,” David Stauff said.

Evan Stauff was flown to Oregon Health Sciences University Children’s Hospital in Portland, and was diagnosed with a catastrophic form of epilepsy April 2, 2010. He was experiencing generalized seizures, or “grand mal” and clustered seizures or “infantile spasms.”

“Evan was having hundreds of seizures in a day. We watched him have thousands. We tried seven different medications, and a special diet to stop the seizures,” David Stauff said.

Treatment proved unsuccessful, and nothing stopped the seizures. The seizures were classified as intractable. Through scans, the Stauffs were told that the back left part of Evan Stauff’s brain was abnormal.

The infant was referred by OHSU to University of California Los Angeles Pediatric Neurology Department.

“We went to L.A. at the end of October,” David Stauff said.

More tests were performed. Evan Stauff was recommended for hemispherectomy surgery, because of the location of seizure activity.

The surgery was completed Nov. 23, 2010. It was discovered by the surgical team, that most of the left hemisphere of Evan Stauff’s brain had not developed while he was in the womb, and it was removed. At the time of surgery, Evan Stauff was 10 months old. His recovery took a few weeks, but the Stauffs were back in Idaho by December 2010, to spend Christmas with family.

“He has been seizure-free since the day of the surgery,” David Stauff said.

Evan Stauff has shown incredible progress since the surgery.

“His progress has exploded. He says ‘dada.’ He can roll over on his tummy, and sit up for 20 minutes at a time,” David Stauff said.

Evan Stauff can understand cause and effect. He can track familiar objects, using facial recognition like photos of Chandlor and Patrick and his parents.

“Evan gives high fives and hugs. He responds well to contrasts of color like red, black and white,” David Stauff said.

Evan has limited function on the right side of his body, because the left hemisphere of his brain is gone. He has loss of vision of the right half of each eye, but David Stauff said Evan Stauff manages to compensate very well. David Stauff is a full-time, stay-at-home dad. He tries to take advantage of every opportunity for Evan Stauff to learn or do tasks.

To donate to Evan, visit the Stauffs’ website (http://www.evanstauff.com) at the bottom of the home page there is a donate link that uses PayPal, or visit any U.S. Bank branch and ask to make a donation to the Evan Stauff Donation account. You can keep up with the Stauffs, and what’s happening today with them through the website.

The Stauffs hope to promote education about infantile spasms, highlight resources and treatment options through the website. They hope other people hear about their experience, and know that you’re not alone.

Karen Sands, Payette, is Evan Stauff’s grandmother. Sands said, “We’re so lucky to have the outcome we have.”

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