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Star Athlete Sisters Are ‘Twinning’ When It Comes to Tackling Celiac Disease

Through Seattle Children’s Celiac Disease Program, twin sisters Claire and Emma learned how to adopt a new gluten-free diet in to their active, athletic lifestyle.

Claire and Emma Brennan are 13-year-olds who are always on-the-run.

Whether it’s sprinting across the basketball court or flying to their next volleyball tournament halfway across the country, these twin sisters stop at nothing to achieve athletic excellence.

“Claire and Emma have sports practice almost every day of the week,” said their mother, Cathy Brennan. “We’re always on-the-go, so I have to make sure they have easy access to snacks they can eat to keep energized.”

The active teens burn calories at a rapid pace given their hours of intensive sports practice, and so a balanced diet is key to performing at their best.

However, food prep takes some careful planning in the Brennan household as both girls are on a strict gluten-free diet to manage celiac disease, an autoimmune disorder that they were diagnosed with in September 2017.

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Seattle Children’s Reaches Beyond Its Walls to Improve Mental Health Care for Kids in the Community and Across the Region

There is a tremendous need for improved access to mental health care and resources for children and teens nationwide.

At Seattle Children’s, its commitment to helping address this need spans not only within the Seattle community, but throughout the region.

According to the U.S. Centers for Disease Control and Prevention, nearly 1 in 5 children have a mental, emotional, or behavioral disorder, such as anxiety or depression, attention-deficit/hyperactivity disorder, disruptive behavior disorder, and Tourette syndrome.

While early intervention is key in managing mental health issues, only about 20% of children with disorders receive care from a specialized mental health care provider.

That’s why Seattle Children’s is continuously working to enhance access to mental health services, promote education and research, and advocate for families affected by mental illness.

The following describes three of the many innovative programs and initiatives that Seattle Children’s offers to help improve mental health care for all children.

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Dying Baby’s Path to Lifesaving Transplant Sheds Light on Disparities in Pediatric Organ Donation

Picturing her daughter making it to her first birthday was difficult for Rachael Rowe as she watched her baby struggle to survive each passing day waiting for a liver transplant.

Time officially took its toll on Feb. 6, 2018 — four months after 10-month-old Raylee was put on the transplant waiting list.

“I remember it was 3:00 a.m. in the morning when I heard Raylee screaming in pain,” said Rowe. “Never in my life had I heard a baby cry like that before. It was terrifying.”

After spending three hours trying to comfort her normally smiley and happy baby, Rowe took Raylee to the emergency room near their home in Portland, Oregon.

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An Interdisciplinary Team Model in Diagnosing Autism Helps Brendan Find His Voice

Brendan Bittinger, 9, was diagnosed with autism spectrum disorder using a team evaluation model developed at the Seattle Children’s Autism Center.

Some say ‘it takes a village to raise a child.’ At Seattle Children’s Autism Center, this concept came to life to a certain degree through the development of a collaborative method for diagnosing autism in children that aimed to improve the diagnostic process and increase efficiency, with the potential of leading to better patient outcomes.

Linda Bittinger’s 9-year-old son Brendan found his ‘village’ at the Autism Center in June 2017 when a team made up of providers from different disciplines came together for a thoughtful diagnostic evaluation that would shape his treatment path to progress.

“When we received his diagnosis, I felt a sense of optimism,” said Bittinger. “I had less worries knowing there were opportunities for treatment. And since then, he’s made tremendous strides.”

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A Surgeon’s Legacy Advances Surgical Care in India

A decade ago, the late Seattle Children’s surgeon, Dr. Richard Grady, began traveling to India for a special mission — to provide urgent surgical care to children born with a rare and complex disorder called bladder exstrophy (BE).

Grady’s dedication to helping under-resourced children in India led to the development of a unique international collaborative that aimed to alleviate the global burden of this surgically treatable disease, as documented in a recent article published in JAMA Surgery.

Dr. Paul Merguerian, division chief of urology at Seattle Children’s, who is helping to carry on Grady’s inspirational work, recalls his colleague’s passionate commitment to care for children not only in the Pacific Northwest region, but in a country located more than 7,000 miles across the globe.

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To Save a Budding Heart, Innovative Surgery Performed for the First Time in the Pacific Northwest

Shanae Ceja, first pediatric patient in the Pacific Northwest region to undergo an innovative heart surgery called the Ozaki procedure, with Dr. Jonathan Chen, who performed the complex surgical technique.

As she watched her daughter being wheeled into the operating room, a striking memory overcame the flood of anxious thoughts going through Marisela Barragan’s mind.

“Just a few months before the heart surgery, my daughter Shanae was telling me how desperately she wanted to try out for her school’s volleyball team,” said Barragan. “Her doctors were advising against doing any type of strenuous sport because it could damage her heart, so I kept telling her ‘no.’”

“Then she turned to me and said, ‘Mom, please allow me to try out. If I’m going to die, I want to have done something in my life that I loved.’ Those words truly broke my heart.”

Barragan knew the only way her daughter could pursue volleyball along with her many athletic passions, like any other healthy 13-year-old, was to take a leap of faith with an innovative surgical technique that has only been performed on a small number of pediatric patients in the world. Called the Ozaki procedure, the complex surgical technique would help repair and put a stop to the disease that was causing ongoing damage to Shanae’s heart.

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Discover the Seattle Children’s Stories You Might Have Missed in 2017

With 2018 in full effect, On the Pulse is taking a moment to hit rewind to share five stories that might have floated beneath the flurry of headlines in 2017.

We invite you to take a look back at some of last year’s stories that inspired us and gave us hope.

1. A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

Courtesy of Amanda De Vos Photography

Amanda De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention.

De Vos would learn that the photo she took of Julia would help to identify a rare eye cancer, retinoblastoma, that was stopped in its tracks with an innovative treatment at Seattle Children’s.

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Kids With IBD Cook up a Recipe for Remission Using a Unique Diet

Avi Shapiro, 17, suffered from Crohn’s disease. He achieved remission through a unique diet called the specific carbohydrate diet (SCD). Now, he has made it his mission to share the benefits of the diet with other kids like him.

Avi Shapiro knows his way around the kitchen. While the average teen might be fishing around their pantry for a bag of potato chips or a box of cookies, Avi is in the kitchen whipping up ingredients for his next delicious concoction. Depending on the day, he might prepare homemade marshmallows, a serving of spaghetti squash pesto or a scrumptious stack of waffles baked to perfection.

The effort that Avi puts into cooking these delectable dishes isn’t purely for pleasure or practice to become the next winner of “Top Chef.” For the 17-year-old, cooking food has become a lifestyle that he has learned to embrace over the last three plus years to remain healthy after achieving remission from Crohn’s disease, a form of inflammatory bowel disease (IBD).

“I learned that being able to cook is a valuable skill to have,” said Avi. “Knowing the types of ingredients to buy which support my well-being and getting to create and eat meals that I actually enjoy feels truly amazing.”

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Pinpointing Pancreatitis: How Family History Played a Role in Amber’s Painful Illness

It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

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Wyatt’s Creativity Cruises Onto Kasey Kahne’s No. 5 Race Car

The design 9-year-old cancer patient Wyatt Zender created for Kasey Kahne’s No. 5 race car.

In just three days, 9-year-old Wyatt Zender and his family will see his artwork come to life on the Chicagoland Speedway.

Wyatt, a cancer patient at Seattle Children’s, was the lucky winner of a coloring contest presented by Great Clips to design the paint scheme for Kasey Kahne’s No. 5 Great Clips Strong Against Cancer Chevrolet SS, which Kahne will drive at the first playoff race of the NASCAR Cup Series, The Tales of the Turtles 400, on Sept. 17.

“Our family is so excited to see Wyatt’s colorful design speed down the racetrack,” said Wyatt’s mom, Heather Zender. “This has been a great opportunity to give Wyatt the chance to do something fun and share his story as well.”

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