On the Pulse

New Drug Helps Twins Harper and Hendrix Regain the Strength to Experience Childhood

Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.

Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.

So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new SMA drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.

Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.

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Boy Scout Gives Back After His Struggle With Rare Condition

The Pintuff family

When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.

As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.

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Study Looks at Harnessing Fitness Technology and Social Media to Encourage More Active Lifestyles Among Cancer Survivors

Physical activity may be one way for teen cancer survivors to reduce their risk of several chronic conditions. A team led by researchers at Seattle Children’s recently tested the practicality of using a Fitbit Flex and Facebook to help encourage physical activity among survivors.

The battle against cancer continues well after remission for many adolescents and young adults. Cancer survivors are at increased risk to develop chronic diseases like obesity, type 2 diabetes, high blood pressure and second cancers.

Physical activity can be an important factor to help lower the risk of developing these conditions while providing an increased quality of life among survivors. However, many studies have shown that cancer survivors maintain a lower level of physical activity than their peers.

A team of researchers led by Dr. Jason Mendoza at Seattle Children’s Center for Child Health, Behavior and Development and Dr. Eric Chow at Seattle Children’s Cancer and Blood Disorders Center recently tested the feasibility of a mobile health intervention aimed at encouraging increased physical activity among teen cancer survivors. The team tapped into wearable fitness technology, the Fitbit Flex, social media and self-determination theory (SDT) to develop an approach that meets teen cancer survivors where they’re at. Read full post »

Bioethics in Action: Josie’s Story

Josie, with her father, Luis, first came to Seattle Children’s when she was 2 months old.

Josie came to Seattle Children’ Emergency Department when she was 2 months old after acquiring a virus and going into respiratory distress. She was also in the beginning stages of heart failure.

Statistically, she was lucky to have made it that far.

Before birth, Josie was diagnosed with Trisomy 18, a life-threatening condition caused by an extra chromosome that disrupts the typical pattern of development in significant ways. Only about 5 to 10% of children with Trisomy 18 survive beyond their first year of life.

“I didn’t expect her to live that long,” said Josie’s mother, Jenny Castillo. “I hoped we would at least have a few days or weeks with her, and we’ve been thrilled with all the time we’ve had.” Read full post »

Cancer Survivors Conquer the Runway with Russell Wilson for a Powerful Cause

Russell Wilson walked the runway with three young cancer survivors for a special fashion show benefiting Seattle Children’s Strong Against Cancer.

Last week, the MoPOP in Seattle became a glamorous gateway to fashion and fun that benefitted Seattle Children’s Strong Against Cancer, a national philanthropic initiative with worldwide implications for potentially curing childhood cancers without the harmful affects of chemotherapy or radiation.

In partnership with Alaska Airlines, renowned fashion designer and Seattle Children’s supporter Luly Yang presented a fashion show to unveil her new collection, while generously sharing the runway spotlight with honored guests representing the important cause.

The show was kicked off by three pint-sized models – 4-year-old Greta Oberhofer, 5-year-old Lucy Watters and 7-year-old Mason Nettleton – each a courageous cancer fighter.

Alaska Airlines paired three of their pilots and captains with each of the kids as they individually strutted down the runway in their custom-made ensembles designed by Yang.

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How Microsoft Data Scientists Are Helping Seattle Children’s Solve SIDS

The story of John Kahan and his wife, Heather, losing their son Aaron to SIDS 13 years ago inspired his colleagues at Microsoft to develop a data analysis tool for SIDS research, which they have donated to Seattle Children’s Research Institute. (Photo by Scott Eklund/Red Box Pictures)

John Kahan manages a team of renowned Microsoft data scientists who are changing how society can use data effectively, from deciding when to plant crops to creating predictive business models.

But when he’s not at work, Kahan commits his time to a personal mission: Raising awareness about Sudden Infant Death Syndrome (SIDS) and fundraising for research. John and Heather Kahan lost their baby boy, Aaron, to SIDS shortly after his birth 13 years ago.

When Kahan’s data science team learned about Aaron, they volunteered to apply Microsoft technology to SIDS data and donate the company’s emerging tech tools to Seattle Children’s researchers who study SIDS.

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Study Prompts Call for More Mobile Laboratories to Enhance STEM Education for Youth

Hands-on experiments offered by many mobile science labs, like Seattle Children’s Science Adventure Lab, have been shown to positively impact test scores and drive interest in STEM subjects.

Researchers are calling for a greater focus on science, technology, engineering and math (STEM) education after a new study illustrated the reach and positive impact of mobile science labs in driving continued STEM interest in children in the U.S. – an interest researchers believe educators must work to foster as the demand in the STEM job market continues to grow.

Previous studies have reported that nine of the 10 fastest growing occupations in the U.S. require STEM skills and education, and employers are seeking workers already equipped with STEM knowledge. But according to the 2015 National Assessment of Educational Progress (NAEP)—known as “The Nation’s Report Card”— only one-third of high school students have the STEM skills needed for college-level classes and a career in STEM.

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Baby Flies Across the Globe for Lifesaving Heart Surgery 24 Hours After Birth

Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.

In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.

Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”

“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »

We Must Stand Together to Protect the Health of Our Nation’s Youth

I am deeply alarmed by the American Health Care Act (AHCA) that was passed in the House of Representatives because it puts the health of our nation’s children at risk. As I think about how the bill jeopardizes healthcare access for the more than 30 million children in the country and more than half of the children in our four-state region who rely on Medicaid, I can’t stand idly by.

It’s for this reason I went to Washington D.C. last week to urge our region’s elected officials, from Washington, Alaska, Montana and Idaho, to continue the tradition of fighting for the health and well-being of children irrespective of their condition, disease or parents’ financial status. And I am asking you to join me in making your voices heard.

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Treatment Helps Kids and Teens Control Anxiety

Anxiety is a natural response that alerts people to situations that they find threatening. Anxious feelings are a part of life for kids, teens and adults, but when anxiety is severe, frequent and lasts for months, it requires professional treatment. Dr. Kendra Read, attending psychologist on Seattle Children’s Psychiatry and Behavioral Medicine team, works with kids and teens with anxiety disorders, helping them identify their anxiety triggers and learn how to control their worries and fears.

“Research shows that once anxiety becomes problematic, most kids do not just grow out of it,” said Read. “In fact, left untreated, anxiety can result in problematic long-term consequences that impact academic achievement, employment, substance use, and development of additional psychological disorders, such as depression.” Read full post »