Neurosciences

Tara Nadella shares her personal experience as the sibling of a patient at Seattle Children’s and explains why she approaches life with a lens of inclusion.

Updated March 4, 2022: Thank you to our community of donors for your outpouring of sympathy, support and interest in celebrating the life of patient Zain Nadella, who recently passed away. Zain was the beloved son of Anu and Satya Nadella, and as a long-time patient, the family considered Seattle Children’s a second home.

We are holding the family in our hearts. Memorial gifts can be sent to Seattle Children’s, and donations will support programs the Nadellas are passionate about, including precision medicine neurosciences, cerebral palsy care and research, mental healthcare, neonatal intensive care and equitable access to care.

I’m 17 and a senior in high school. Family time is important to me, especially with my siblings! When my brother, Zain, and I spend time together, we usually listen to music or go to the movies.

Pretty ordinary sibling stuff, but what makes our story particularly unique is the fact that Zain has cerebral palsy.

Zain is 23 and has been a patient at Seattle Children’s for his entire life – so we see the hospital as a second home. We’ve spent a lot of time there, including holidays like Thanksgiving and Easter.

Last year, Zain was in the intensive care unit for his birthday, so we brought the party to him — taking turns visiting his room and singing. The staff was so gracious about everything, and we were able to bring joy to Zain even though he was in a hospital bed.

From my first taste of onion rings in the cafeteria as a child to understanding how to care for my brother today, this hospital has been a partner on our journey. All children and families deserve the exceptional care we’ve been so fortunate to receive at Seattle Children’s. Read full post »

Daniel Sokoloff and his mom, Lara Sokoloff, photographed here when Daniel was younger, were one of 100 families who contributed to a study aimed at understanding common birth defects of the brain.

In the largest genetic study of the most common birth defects of the brain diagnosed during pregnancy, researchers from Seattle Children’s Research Institute say their findings evolve our understanding of brain development. The findings will also change the information given to expecting parents when cerebellar malformations, such as Dandy-Walker malformation and cerebellar hypoplasia, are detected prenatally.

With funding support from the Dandy-Walker Alliance and the Philly Baer Foundation, the results gathered from 100 families provide the most accurate information to date about the genetic and non-genetic causes of birth defects involving the cerebellum. They will also help doctors counsel parents about their child’s prognosis after they’re born and their risk of having another child with the abnormality.

“For those who are pregnant, you certainly don’t want to have a problem with the baby, but if doctors detect a brain abnormality, you want accurate information about what that means,” said Dr. William Dobyns, the senior author on the paper published in the American Journal of Human Genetics and an investigator in the Center for Integrative Brain Research. “It’s the same after birth. If you have a child at risk for developmental challenges, it helps to know the cause and what’s going to happen. This study significantly advances our ability to answer those questions.” Read full post »

Arabella Smygov, 7 months, of Lynnwood, Washington was one of the first babies in the state to receive the gene therapy, Zolgensma. The U.S. Food and Drug Administration approved Zolgensma for the treatment of Spinal Muscular Atrophy in children less than 2 years of age this month.

When Arabella Smygov was diagnosed with spinal muscular atrophy (SMA) type 1 at 3 months old, the first recommendation Dr. Fawn Leigh, a neurologist at Seattle Children’s, gave her parents, Sarah and Vitaliy, was to wait on searching for information about SMA online.

This is because up until a few years ago, SMA type 1 was a fatal diagnosis. Most of the information available online painted a bleak picture. Babies diagnosed with SMA type 1, the most severe and common form of the neurodegenerative disease, usually don’t survive beyond age 2 and if they do, they require full support for breathing from a ventilator.

Leigh had good reason for wanting her parents to have hope for Arabella’s future. Two treatments, including the first-ever drug approved for the condition by the U.S. Food and Drug Administration (FDA) in 2016 called Spinraza, and Zolgensma, a gene therapy approved by the drug agency this month, are rapidly changing the trajectory for children with Arabella’s condition.

“I always remember back to when I had to offer my first SMA diagnosis,” Leigh said. “I was heartbroken to tell this young couple that we didn’t have anything for their baby. Now, we’re planning a future for these babies because we have not one, but two good treatment options.” Read full post »

Makenzie Childs, 6, has returned to doing what she loves most – competitive dance – following a stroke in October 2017.

The lopsided smile on Makenzie’s face said it all. She had just thrown up, and her dad, Shawn Childs, was helping her get cleaned up in the bathtub.

“My husband yelled for me to come into the bathroom and then asked Makenzie to smile,” Jamie Childs, Makenzie’s mom, said. “The smile was devastating. It was only the right half of her face. I knew something wasn’t right.” Read full post »

At 5 months old, Tyler Cassinelli, now 3, was battling both liver cancer and intractable epilepsy. When he was at Seattle Children’s preparing to undergo cancer treatment, Tyler had a seizure that stopped his breathing.

“It was one of the scariest moments of my life,” said Jane Cassinelli, Tyler’s mother. “We could see his stats on the monitor dropping, and doctors came rushing in.”

Doctors quickly intubated and revived Tyler. Five months later, his cancer was in remission. However, he continued to have unpredictable and life-threatening seizures that multiple medications failed to stop.

Genetic testing revealed that Tyler had a mutation of the HCN1 gene. Children with this rare abnormality are at risk for traumatic epilepsies, said Dr. Nino Ramirez, director of the Center for Integrative Brain Research.

“It was difficult to hear that Tyler was expected to have a lifetime of hard-to-control seizures due to a genetic disorder,” said Cassinelli.

In addition to the mutation, Tyler had a brain malformation called focal cortical dysplasia, a common cause of intractable epilepsy. Testing showed Tyler’s seizures were coming from an area on the left side of his brain. Brain surgery to address the problematic lesion could help, and what’s more, his brain could also enable researchers to unlock some of the mysteries of the genetic mutation.

“Tyler’s situation was unique and extremely desperate,” said Ramirez. “There is great clinical interest worldwide in better understanding the HCN1 mutation, and Tyler’s brain could provide a rare window into its role in epilepsy.” Read full post »

After doctors found a tumor and cyst in her brain, 13-year-old Emiliah Albanese discovered that channeling her love for drawing was a helpful way to relieve stress and express her feelings.

When she learned her younger cousin would need heart surgery, Emiliah put her artistic skills to work by creating a personalized heart drawing. On social media, her art quickly caught the attention of other families who had children with heart issues. She began receiving hundreds of requests to create personalized “heartwork.”

Emiliah’s striking watercolor-painted drawings often feature children and anatomically correct hearts with thoughtful, customized details. In one picture, a girl waters colorful flowers that blossom from a heart. In another, a boy pulls a wagon carrying a heart. Through her “heartwork,” Emiliah hopes to help brighten what can be a difficult time for children and their families.

“I feel really happy when I’m drawing for others, especially knowing that the drawings seem to bring joy to other kids and their families,” said Emiliah. Read full post »

A new study finds that any amount of smoking during pregnancy – even just one cigarette a day – doubles the risk of an infant dying from sudden unexpected infant death. (Photo by Getty Images)

The first findings to result from a collaboration between Seattle Children’s Research Institute and Microsoft data scientists provides expecting mothers new information about how smoking before and during pregnancy contributes to the risk of an infant dying suddenly and unexpectedly before their first birthday.

According to the study published in Pediatrics, any amount of smoking during pregnancy – even just one cigarette a day – doubles the risk of an infant dying from sudden unexpected infant death (SUID). For women who smoked an average of 1-20 cigarettes a day, the odds of SUID increased by 0.07 with each additional cigarette smoked.

“With this information, doctors can better counsel pregnant women about their smoking habits, knowing that the number of cigarettes smoked daily during pregnancy significantly impacts the risk for SUID,” said Dr. Tatiana Anderson, a researcher in Seattle Children’s Center for Integrative Brain Research and lead author on the study. “Similar to public health campaigns that educated parents about the importance of infant sleep position, leading to a 50% decrease in sudden infant death syndrome (SIDS) rates, we hope advising women about this risk will result in less babies dying from these tragic causes.”

If no women smoked during pregnancy, Anderson and her co-authors estimate that 800 of the approximately 3,700 deaths from SUID every year in the U.S. could be prevented, lowering current SUID rates by 22%. Read full post »

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 »