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.
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.
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 »
Our son, Sam, goofing around at home days before he developed a life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome.
Parents David and Jennifer Cowan share how the rapid initiation of a special medical diet known as the ketogenic diet helped their son recover by leaps and bounds after he suffered from a rare, life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome (FIRES). For more about how the ketogenic diet is used to treat epilepsy, please see a Q&A with the ketogenic diet team from Seattle Children’s Neurosciences Center.
Over the summer of 2017, our 4-year-old son Sam came down with a high fever that lasted about a week. Seemingly recovered, a day or two later he awoke as normal, snuggled and watched morning cartoons. But shortly after, and completely unexpectedly, Sam began to seize uncontrollably and stopped breathing. Read full post »
Neurologists at Seattle Children’s prescribe the ketogenic diet for the treatment of epilepsy and other neurological conditions.
Doctors first started using the ketogenic diet to treat patients with epilepsy in the 1920s. While the diet has evolved over the decades to include less strict versions, and is gaining mainstream popularity for weight loss, children with epilepsy and other neurological conditions continue to benefit from its seizure-controlling effects.
The ketogenic diet team at Seattle Children’s Neurosciences Center takes a modern approach to help families use food as medicine. Here, ketogenic diet team members, neurologist Dr. Christopher Beatty; advanced practice provider Haley Sittner; clinical dietitian Marta Mazzanti; and nurse Deborah Rogers discuss how the diet works and how the team sets families up for success on the ketogenic diet. Read full post »
New research from Seattle Children’s offers fresh insight into how the brain sets the pace of breathing.
Next time a workout has you winded, the inhibitory neurons in your brain may be to blame. This is according to new research from Seattle Children’s Research Institute that offers fresh insight into how the brain sets the pace of breathing.
In a study published in the journal Nature Communications, researchers used laser light to manipulate very specific classes of neurons responsible for breathing. The technique, known as optogenetics, helps scientists isolate neurons in the brain to study their function.
When stimulated in the lab, the researchers found excitatory neurons – the brain’s go signal – actually slow breathing, while inhibitory neurons – the brain’s stop signal – intervene to make breathing more rapid. In addition to explaining how the brain adapts breathing in response to everyday cues, the finding could lead to more precise treatments for neurological conditions that frequently involve breathing abnormalities. 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. 
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.
