Patient Stories

All Articles in the Category ‘Patient Stories’

“I’ll Have Scars, Too”: A Father-Son Bond More Than Skin Deep

A few weeks after Ryder Gordon’s first surgery at Seattle Children’s, Thomas Gordon went to the tattoo shop and got an exact replica of his son’s scar on his neck and chest.

When Ryder Gordon was 2 years old, he underwent his first surgery. It took 12 hours and saved his life.

Thomas Gordon and his wife, Magi, vividly remember the day they handed over their son to surgeons at Seattle Children’s.

“It was gut-wrenching,” said Magi. “You want more than anything to switch places with your child.”

Ryder was the couple’s first child and they never imagined being thrust into a world of comprehensive medical care. But there they were, among the bright lights of the surgical suites and the bustling halls of the hospital.

“Going through a medical journey really humbles you,” added Magi. “Being at Seattle Children’s brought us a sense of comfort. I felt like they cared about us, not just as patients, but as people.”

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“We’re Not Just Transplanting Organs, We’re Transplanting Lives”

The Hurtados enrolled their children in the Studies in Pediatric Liver Transplant (SPLIT) database which follows children who receive a liver transplant in the U.S. or Canada. They hope researchers will use this information to help other families like theirs.

Having one child in need of a liver transplant can be tremendously challenging for a parent. Eugenia and Justino Hurtado have four.

All four of the Hurtado children were born with Maple Syrup Urine Disease (MSUD) — a rare genetic metabolic disorder in which the body is unable to break down certain parts of proteins due to an enzyme deficiency. The disease can lead to a buildup of toxic substances that cause organ and brain damage.

Adolescents and adults with MSUD are also at risk for attention deficit disorder, anxiety and depression. Infections, stress, surgeries and injuries can lead to neurological damage at any age.

People with MSUD get most of their nutrients from a prescribed liquid formula. They can eat some low-calorie foods but must be very careful. If they stray from the diet, they can experience muscle spasms, breathing failure, intellectual and developmental disabilities or even coma. Read full post »

Seattle Children’s Mobile ECMO Service Treats Critically Ill Kids During Transport Across More Than a Million Square Miles

In 2016, Seattle Children’s extended their mobile extracorporeal membrane oxygenation (ECMO) capabilities to provide the service to critically ill children during transport to the hospital from anywhere in a five-state region. ECMO is an advanced life-support therapy that functions for the heart and lungs when the organs fail or need to rest. Seattle Children’s became the first children’s hospital on the West Coast to offer mobile ECMO service, providing critically ill patients with life-saving cardiac, respiratory or transplant care while they are being transported to the hospital.

“The main reason we developed mobile ECMO is because it enables us to take care of kids over a very broad region and offer the same type of high-level medical care to the kids who are not fortunate to live near a hospital like Seattle Children’s,” said Dr. Michael McMullan, chief of Cardiac Surgery and director of mechanical cardiac support and extracorporeal life support services at Seattle Children’s, as well as an professor of surgery at the UW School of Medicine. “When we looked at data in Washington state, we found that kids who do not live near a hospital like ours are at a three-fold increased risk of dying of illness due to a lack of access to care.” Read full post »

A New Neurosurgical Procedure is Bringing Promising Seizure Relief to Some Epilepsy Patients

Epilepsy can be very difficult to treat – and some families explore a range of options seeking relief from seizures for a child with epilepsy looking for a solution. For 14-year-old Taylor Johnson, a procedure known as deep brain stimulation (DBS) resulted in her experiencing a completely new life and the significant seizure relief she and her family have been trying to find.

In deep brain stimulation, a small battery-powered device sends low-level electrical signals through the brain. The device is similar to a pacemaker in that it uses electrical pulses to help regulate brain function. It can be programmed remotely to help regulate brain function and reduce seizures.

During surgery, a neurosurgeon places two thin electrical wires into deep brain tissue. The wires are connected to a small battery that can be controlled remotely to stimulate the area of the brain called the thalamus. The thalamus is the central point for relaying signals to other parts of the brain. Read full post »

Finding Myself at Seattle Children’s

Amna and her family moved to Seattle to get the best treatment possible for her daughter Jude, who has sickle cell disease. This is Amna’s story in her own words. 

I will never forget the moment I learned I was pregnant with my daughter, Jude. I had moved from Sudan to join my husband, Amar, in the United States the year before. In my culture, we have big families with lots of kids, and Amar and I wanted to start our own family right away.

It took a long time for me to get pregnant, but when I finally did, I felt like I was flying! I named my baby Jude that day. In Arabic, it means “the gift.” She was my gift from God.

Back then, I never imagined my baby’s life would be at risk before she reached her first birthday.

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The Race to Save Sirish’s Brain

A smiling family of two parents and three children posing for the camera with a white background.

Sirish, pictured in the top row on the left with his family, unexpectedly began developing seizures at age 11. Learn how teams at Seattle Children’s helped to protect his brain.

Sirish was a healthy, happy boy with no underlying medical conditions aside from food allergies and eczema, both of which were easily managed at home.

Then one day, he spiked a fever.

Initially, his mother, Jyothi, a physician who previously practiced in India, wasn’t concerned. The fever broke, and Sirish seemed to improve.

About a week later, though, he spiked another fever. This time, medication didn’t help. Then, the unimaginable happened: he had a seizure.

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Some Doctors Wear White Coats, Others Wear Tiaras – Dr. Klane White Is Comfortable in Both

 

A man wearing a doctor's white coat and a tiara smiling and looking at a toddler, who is looking back at the man.

Dr. Klane White is an international leader and advocate for children like Emma with rare skeletal health conditions. As the parent of a child who had a complex medical condition, he knows what it feels like to be on the receiving side of a difficult medical diagnosis and care –– and it’s helped shape him into the incredible provider, researcher and surgeon he is today.

Dr. Klane White leads the Skeletal Health and Dysplasia Program at Seattle Children’s. He is an international expert in the care of children with mucopolysaccharidosis (MPS) and skeletal dysplasia, lecturing around the globe on the orthopedic management of these conditions. In addition to being the only pediatric orthopedic surgeon in the world to serve as principal investigator on phase 3 clinical trials for rare skeletal conditions, he serves on the medical advisory board of Little People of America, the scientific advisory board of the National MPS Society and is an executive founding member of the Skeletal Dysplasia Management Consortium. This story is one example of the compassionate care he and other members of Seattle Children’s Orthopedics and Sports Medicine Program provide to children every day.

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Cutting-Edge Clinical Trials for Alagille Syndrome Help Families Find Relief from Rare Condition

A woman leaning down holding a young girl on a path in a park.

Amanda and her daughter, Amelia, have both been treated at Seattle Children’s for Alagille syndrome.

When Amanda Thorlacius found out she was pregnant with a little girl, she was overjoyed. But she wondered if her daughter would inherit the same genetic condition that robbed her of a normal childhood.

“Give me all the diseases in the world, but don’t give Alagille syndrome to my children,” Amanda said.

Alagille syndrome (ALGS) is a rare, inherited condition in which children may have too few bile ducts in the liver. This causes problems with the way bile moves and makes it hard for the body to remove toxins.

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The Gift of Time

A woman holding a toddler with a lake and a forest in the backgroundColleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.

They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.

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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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