On the Pulse

One Family, Two Children and a 16-Year Quest for Answers

A woman and a man standing next to each other in downtown Seattle.

In March 2020, Maleea (on left) and her brother Malachi started infusion treatments at Seattle Children’s every other week for a rare genetic condition, CLN2.

Sabrina and Reiff Castillote knew something was wrong with their daughter Maleea’s health when she was just 5 days old. Then, their 6-year-old son Malachi’s behavior became concerning.

For over 15 years, Sabrina and Reiff took their children to countless specialists, but they never received a clear diagnosis. “We were told our daughter was considered ‘failure to thrive,’ without any real answers to as to why,” Sabrina said. “Some providers thought Malachi might have autism and ataxia, but not all their symptoms lined up.”

Finally, in 2019, they got an answer.

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An Artist in Equity: Michael Willen Winner of 2021 Odessa Brown Ken Feldman Award

When Michael Willen, art therapist, was growing up in Boulder, Colorado during the 1990s, he heard lots of talk about accepting those who were different from you. Reality, however, often didn’t align with the talk.

“You couldn’t be openly gay or talk about something like being transgender,” he recalls. “I wanted a community to connect with, but I didn’t have that resource until I went to college. I wondered why we couldn’t have more of that.”

These days, Michael is helping build an open, accepting community for students at the Alyssa Burnett Adult Life Center and inpatients at Seattle Children’s. His crowning achievement is Diversity Club, a class at the Alyssa Burnett Center that celebrates diversity and helps students become advocates for equity.

For these reasons, Michael recently received the 2021 Odessa Brown Ken Feldman Award, one of Seattle Children’s highest honors, which recognizes individuals or teams that encourage, promote, and display compassion and advocacy for all people.

The Odessa Brown Children’s Clinic helped establish this award in 2006 to recognize individuals and teams that, beyond their formal job description, model diversity, inclusion, and quality care with dignity. A committee administers the award every year.

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Should Schools Require COVID-19 Vaccinations? An Ethics Expert Weighs In

A child wearing a face covering getting a vaccine.

Isaac was one of the first 5 – 11 age kids to get vaccinated at Seattle children’s

Since the start of the COVID-19 pandemic, people have been asking ethical questions about vaccinating children against the disease: Is it necessary to vaccinate children, who seem to experience the disease differently than adults? Should children in school be required to get the vaccine?

We spoke to Dr. Doug Diekema, an emergency medicine physician at Seattle Children’s and director of education in the Treuman Katz Center for Pediatric Bioethics, to discuss these and other questions about vaccinating kids against COVID-19. Read on to learn more.

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The Mission of a Lifetime: State to Use Dr. Sihoun Hahn’s Newborn Screening Test for Wilson Disease

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

 

The lifetime goal of Dr. Sihoun Hahn, director of the Wilson Disease Center of Excellence and investigator in Seattle Children’s Research Institute’s Center for Integrative Brain Research, is one step closer to being achieved.

After more than 30 years studying Wilson disease, Hahn’s newborn screening test for this rare genetic condition will be trialed in a pilot study by the Washington State Department of Health by the end of the year. If the study is successful, Hahn’s test could soon be used to diagnose infants across the country with this life-threatening, but easily treated, disease.

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Seattle Children’s Research Division: Celebrating 15 Years of Innovation

For the past 15 years, Seattle Children’s Research Division has been at the forefront of breakthrough innovations. From new drugs to treat cystic fibrosis, to first-in-the-nation use of laser ablation for epilepsy and brain tumors to remove unwanted cells, the research division is advancing our mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.

Here, we take a look at some of the achievements of the past decade-and-a-half.

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Building a Community to Support Seattle Children’s Veteran Colleagues

Cameron, senior IT project manager and communications chair of the Veterans Inclusion Network, celebrates his stepfather’s retirement from the Marine Corps in 2009 after 21 years of service.

Do you know if any of your co-workers are military veterans?

Veterans work in just about every type of role at Seattle Children’s. You may work closely with a veteran and not even know it.

Veterans face special challenges in the workplace. Seattle Children’s Veterans Inclusion was formed in late 2019 to provide resources for veterans, recognize the contributions they make at Seattle Children’s, give them a voice within the organization and provide a place where veterans and their families belong.

 

To learn about the network’s activities and how workforce members can support veterans, we spoke with the leaders of the Veterans Inclusion Network:

  • Jeff, chair: biomedical equipment technician III, Clinical Engineering; served in the Navy for 11 years, including during the first Gulf War
  • Cameron, communications chair: senior Information Technology (IT) project manager, Disaster Recovery/Business Continuity; father, stepfather and other family members served, mostly in the Marine Corps
  • Jesse, mentor liaison: senior director, Real Estate and Property Operations; served in the Navy for six years

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Limited-Edition Magic: The Gathering Card Launch in Support of Seattle Children’s Autism Center

Since 2015, Renton-based Wizards of the Coast, a family of studios specializing in role playing, trading card and digital games, has partnered with Extra Life, an annual fundraising event where people from the gaming industry come together, to raise money for Seattle Children’s Autism Center.

This year, Wizards of the Coast  hopes to raise more funds than ever with the drop of a limited-edition collection of Magic: The Gathering cards, of which 50% of each purchase goes directly to supporting Seattle Children’s Autism Center.

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Seattle Children’s Looks to Become “Center of Excellence” In Gene and Cell Therapy

Recent breakthroughs in cell and gene therapy research within Seattle Children’s Research Division, which includes both Seattle Children’s Research Institute and Seattle Children’s Therapeutics, has contributed to the creation of new technologies, new companies and – researchers hope –will lead to a range of new treatments and cures for pediatric diseases down the line.

Cell and gene therapy has become an increasingly popular form of therapeutic treatment and research in recent years.

“It has really become a third pillar of therapeutic treatment behind small molecules and monoclonal antibodies – cell therapy is here to stay and it’s growing exponentially as more capabilities are developed,” said Dr. Brian Phillips, director of the Intellectual Property Core at Seattle Children’s, which aims to help Seattle Children’s researchers and clinicians commercialize their intellectual property. Read full post »


A Comic Book Hero Explains Inflammatory Bowel Disease

Professor Nimbal explaining bacteria to the two children.

Doctors often deal with medical conditions that might be somewhat embarrassing or just difficult for patients to understand. Inflammatory bowel disease, a serious and debilitating condition that, as the name implies, affects the intestines and everything that comes out of them, is one of those ailments.

Medical providers who treat and investigate IBD have to find ways to explain their patients’ situation during medical appointments that may last less than 30 minutes—all while the patient and their caregivers might be overcome with emotion or concern. Too often what the doctors tell them is lost or only partially retained.

Dr. David Suskind, a pediatric gastroenterologist at Seattle Children’s Inflammatory Bowel Disease Center, realized that the caregivers of the children he treats can read pamphlets or educational books about the disease, but he didn’t have anything specific for the kids that explained their condition.

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How Hunger Helped Dawson Learn to Eat

Photo of a baby smiling with food on his bib.

Today, Dawson is a well-nourished and thriving 9-month-old who eats all his meals and takes all his medications by mouth. If he hadn’t participated on Children’s hunger-based tube weaning process, he might have been dependent on a feeding tube for a much longer time.

When a pregnant Heather Henson learned her baby, Dawson, had hypoplastic left heart syndrome — a rare and serious condition where the left side of the heart is not fully developed — she immediately began researching the disease and the hospitals that treat it.

Heather and her family live in Anchorage, Alaska. The state doesn’t have a pediatric hospital equipped to perform the heart surgeries Dawson would need to survive, so she had to give birth somewhere else.

During her research, Heather found an HLHS Facebook group where other parents shared their experiences with the disease. Stories of successful surgeries and thriving babies gave her hope, but she worried when she saw many children who relied on feeding tubes after their surgeries.

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