Neurosciences

Shanahan “Shanny” Dameral, 19, recently participated in a clinical trial at Seattle Children’s investigating a new drug for children with treatment-resistant epilepsy.

For the first time in his life, Shanahan “Shanny” Dameral, 19, has a girlfriend. Soon, he’ll be graduating with a high school diploma and looking for his first job on the Kitsap Peninsula.

What seems routine for many is a big deal for Shanahan and other children living with treatment-resistant or intractable epilepsy. For reasons largely unknown, seizures in this subset of children persist long past their discovery in early childhood despite being treated with multiple medications and undergoing surgery to remove the affected parts of their brain.

Diagnosed with epilepsy at age 5, life for Shanahan has always come with seizures attached. When his seizures returned after a second brain surgery shortly after his 16th birthday, his mom Linley Allen, hoped for a medical breakthrough.

“We needed to find something else since another surgery was out of the question,” Allen said. “We had heard about a drug being studied for a more severe seizure condition. I kept holding onto hope that it might be expanded to treat Shanny’s type of seizures because it was all we had at the time.”

Then last year, Shanahan’s longtime neurologist at Seattle Children’s, Dr. Russell Saneto, told the family about a phase 1 trial of an experimental therapy known as Nab-rapamycin (ABI-009) for patients with intractable epilepsy at Seattle Children’s.

“Dr. Saneto has always pushed for better ways to treat Shanny’s seizures, and even after he explained that this trial was early in the research process, Shanny popped right up and asked, ‘When do we start?’” said Allen. “I was like, ‘Shanny, this is going to be a couple of years out,’ so we were both surprised when Dr. Saneto said, ‘No, you can start next month.’” Read full post »

Danica Taylor, 3, has undergone treatment at Seattle Children’s for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT.

Recalling the treatments her daughter has had over the past year for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT, Audrey Taylor says it’s like watching a game where your favorite sports team keeps losing and then regaining the lead.

“There are so many times when you feel like you totally got this, followed by moments where you’re not really sure what’s going to happen next,” she said.

Diagnosed with ATRT at 21 months old, Danica Taylor, now 3, has endured multiple rounds of chemotherapy, stem cell transplants, two brain surgeries, laser ablation and proton beam radiation therapy to try to stop the fast-growing tumor.

Danica remained strong through it all.

“She’s just the bravest and toughest kid I know,” Taylor said. “Whenever I have to do something hard, I summon my inner Danica.” Read full post »

As a naturally-talented quarterback and cornerback for the Northwest Junior Football League’s North Creek Jaguars, Andrew Ronneberg, 14, participated in the study led by researchers from Seattle Children’s Research Institute exploring concussion in football players ages 5-14.

New research from Seattle Children’s Research Institute and UW Medicine’s Sports Health and Safety Institute found concussion rates among football players ages 5-14 were higher than previously reported, with five out of every 100 youth, or 5%, sustaining a football-related concussion each season.

Published in The Journal of Pediatrics, the study summarizes the research team’s key findings from data collected during two, 10-week fall seasons in partnership with the Northwest Junior Football League (NJFL). Licensed athletic trainers from Seattle Children’s treated and recorded concussion from the sidelines at NJFL games to allow researchers to characterize concussions in this age group – from how often players sustained a head injury to factors that influenced their risk of injury.

“Measuring the incidence of concussion in grade-school and middle-school football players is essential to improving the safety of the game,” said Dr. Sara Chrisman, an investigator in the research institute’s Center for Child Health, Behavior and Development and lead author on the study. “It’s hard to determine the impact of prevention efforts if we don’t know how often these injuries occur at baseline.” Read full post »

Update: Since we first shared her story in November 2018, Kira has been featured in local, national and international news outlets. See her capture the hearts of viewers around the world in the highlights reel below, and watch for more from Kira as she prepares to perform in the 22nd Annual LUMA Guild Concert to benefit Seattle Children’s. 

About four years ago, Kira Iaconetti, 19, began noticing something weird that would happen when she was singing or listening to music.

“It was like a light switch turned off in my brain,” said Kira, a talented self-taught musician who has been performing in musicals since she was 6 years old. “Suddenly, I was tone deaf, I couldn’t process the words in time with the music and I couldn’t sing.” Read full post »

For 13-year-old Zack Edge, playing the drums came naturally ever since he laid his eyes on his very first drum set at 3 years old.

Yet other parts of Zack’s life didn’t come so naturally, such as his ability to stand or walk.

“Zack was born with cerebral palsy,” said his mother Sara Edge, “and over the course of his short lifetime he’s gone through a lot and has had to overcome so much.”

Cerebral palsy (CP) is a condition that affects muscle movement. The muscles of some children with CP are stiff and rigid, which is called spasticity that leads to stiffness in the muscle and joints causing movement to be very difficult.

“It wasn’t until we went to Seattle Children’s that Zack’s life completely changed,” said Edge.

Read full post »

Savannah Miller, 17, poses with nurse practitioner Lindsey Thomsen, who dressed up as Dr. Grey from the popular television show to make Savannah’s dream of meeting the fictional doctor a reality.

Doctor appointments aren’t usually a fun experience for 17-year-old Savannah Miller who was born with Down syndrome. Usually, trips to the hospital are accompanied with a fair share of reluctance and anxiety. During a recent trip to Seattle Children’s, however, that all changed thanks to Lindsey Thomsen, a pediatric nurse practitioner in the pre-anesthesia clinic at Seattle Children’s, who went above and beyond her usual duties. Thomsen was inspired by one of Savannah’s favorite television shows to turn a trip to the doctor into an unforgettable experience for Savannah and her family.

Savannah has been a patient at Seattle Children’s since she was a baby, undergoing her first open heart surgery at only 3 months old. Hospital stays and check-ups have been a large part of Savannah’s life, which understandably can cause some unease. That was the case when Thomsen first met Savannah a few weeks ago. They were meeting to talk about an upcoming procedure.

“It was a challenge just to get her in the door that day,” said Jill Miller, Savannah’s mother.

Savannah was visibly upset and refused to have her vitals taken. Getting through the appointment was a struggle, but eventually Savannah warmed up to Thomsen.

“Will you be there?” Savannah asked Thomsen, referring to the day of the procedure. Read full post »

When other kids ask Reid Watkins, 8, about the leg braces he wears, he likes to tell them they help him ‘walk awesome.’

The outgoing third grader was diagnosed with cerebral palsy and hydrocephalus at 16 months old. Until undergoing two surgeries over the course of two years at Seattle Children’s, both conditions had limited his ability to walk on his own.

That made taking part in this year’s Hydrocephalus Association Seattle WALK to End Hydrocephalus all the more important to Reid. For the last seven years, the Watkins family has participated in the walk at Magnuson Park as a way to raise awareness about the condition. Read full post »

Bear Brother, 1, underwent emergency spine surgery when he was diagnosed with a neurological condition known as a Chiari malformation.

Instead of picking up balloons and cupcakes, Lisa Hannigan and Robert Brother found themselves waiting in the Pediatric Intensive Care Unit (PICU) at Seattle Children’s one day before their son’s first birthday. In less than 36 hours, they had watched as their perfectly healthy son, Bear Brother, lost use of his arms and hands before he was rushed into emergency spine surgery for a neurological condition known as a Chiari malformation.

“It all happened so quickly,” said Hannigan. “After Bear’s daycare called me at work, we got to the Toppenish emergency center around 10 a.m. First thing the next morning he was going into surgery at Seattle Children’s.” Read full post »

Emily Talbot, 17, shares her story about her lifelong battle with a rare brain disease and how she has overcome the physical and mental health challenges caused by the condition through writing and performing music.

Although I look like any other 17-year-old, people don’t know that I live in pain 24 hours a day.

Since the age of 7, I have had 14 brain surgeries, 12 back surgeries and 6 stomach surgeries. I can’t begin to count how many spinal taps I’ve had.

Read full post »

Dominic Donati, then 9, eating for the first time six days after he suffered multiple strokes.

Sometimes it is the simplest of moments that can bring a family with a child in the hospital the most hope. For Tony and Laurie Donati, such a moment occurred when a neurologist at Seattle Children’s Neurosciences Center handed their son Dominic Donati a pen and paper and asked him to write a sentence only days after suffering multiple strokes.

Unable to speak at the time, Dominic, then 9, wrote, “Hi. My name is Dom.”

“It makes me cry every time I think about him writing this incredibly simple sentence,” Laurie, his mom, said. “Dominic’s stroke was the most awful thing that has ever happened to our family. I think everyone in the room felt excited because it was the first time we knew that he could still communicate with us.” Read full post »