A brand new day
Savvy donors are supporting one of the nation’s best and most innovative pediatric epilepsy programs, creating new opportunities to help kids control seizures and families get back to normal.
Breanne and Jesse Payne didn’t know anything about Doernbecher Children’s Hospital when they drove up the hill to OHSU for the first time little more than a year ago – all they knew is that they had to find help for their infant daughter.
Just days after the family moved to Salem, five-month-old Emmy began having terrifying clusters of seizures that rocked her small body. Confused and distraught, her parents sought answers, but a diagnosis proved elusive. Finally Emmy’s pediatrician recommended Doernbecher, and everything changed.
“It’s impossible to describe the relief we felt when we got to Doernbecher, and a whole team of experts were instantly dedicated to helping Emmy,” said Jesse Payne. “They took the time to understand what was happening, and they had the tools and expertise to diagnose her.” Emmy’s diagnosis was a rare form of epilepsy caused by congenital problems with brain development.
A comprehensive program to help kids
Epilepsy is a commonly misunderstood neurological disorder affecting more than 45,000 children in the U.S. each year – about 500 a year in Oregon and southwest Washington. It is marked by regular seizures – electric storms that move across the brain which can trigger convulsions, loss of bodily control and other severe reactions. Though epilepsy can often be controlled through medication, some patients require special dietary therapy or surgery. Its emotional impacts are especially hard on kids and families.
“I don’t know where our family would be without Doernbecher. To every donor who has helped make possible our daughter’s future, I offer you my heartfelt thanks. You are our heroes.”
- Breanne Payne, mother of Emmy
Fortunately, Doernbecher’s neurology and neurosurgery programs are ranked among the best in the country – and passionate donors are stepping up to ensure that the epilepsy team has what it needs to help kids like Emmy.
“This is the kind of incredible program for which we knew philanthropy could make a huge difference,” said Cheryl Joshi of Friends of Doernbecher, the hospital’s largest community fundraising organization, which in 2009 committed a $1 million leadership gift to upgrade the program’s clinical space and recruit new experts. “The program is so good it’s attracting families from far beyond our region – and we knew we needed to help meet all the needs.”
National experts inspire community support
Colin Roberts, M.D., came to Doernbecher a decade ago to lead Doernbecher’s comprehensive epilepsy program in which physicians, pediatric neurosurgeons, nurses and social workers specially trained in epilepsy work together to provide the region’s widest range of health care services for kids and families struggling with the burdens of the disease – from diagnosis and monitoring to sophisticated treatment options.
Doernbecher has the state’s only ketogenic diet program that also offers modified Atkins and low-glycemic diets to control seizures. These diets alter the body’s metabolism and are proven effective, especially in treating seizures that do not respond to medications. The Payne family credits this approach with controlling their daughter’s seizures – which disappeared within weeks of beginning the ketogenic diet.
Children with seizures that are resistant to medications are also evaluated as candidates for surgery through a battery of high-tech tests – including state-of-the-art imaging and monitoring that is unique in the region. At Doernbecher, many of these systems are completely mobile and are able to record critical diagnostic information while young patients are running down the hospital hallway, walking to lunch with mom, or taking a nap.
If surgery is recommended, families work with Nathan Selden, M.D., Ph.D., one of the country’s best pediatric neurosurgeons. Dr. Selden is the Mario and Edith Campagna Chair of Pediatric Neurosurgery, an endowed position made possible by a $2.5 million philanthropic investment by the Campagnas, who believe that attracting the best and brightest experts to Doernbecher will advance opportunties for children for generations to come.
“I don’t know where our family would be without Doernbecher,” said Breanne Payne as she cuddled her tutu-clad daughter during a recent trip to the hospital. “To every donor who has helped make possible our daughter’s future, I offer you my heartfelt thanks. You are our heroes.”