Patient Stories

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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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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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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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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Colleen 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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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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There may be no better way for a 3-year-old to celebrate cancer remission than with a Frozen-themed birthday party. That’s exactly what Penny Hatch and her family did last weekend.

Penny was diagnosed with neuroblastoma, a solid-tumor cancer with a survival rate of about 50%, three months after her baby brother, William, was born with a life-threatening heart condition. Today, William is thriving at home and Penny is in remission.

Penny’s final immunotherapy treatment was on Sept. 2 after a year of treatments that included surgery, chemotherapy, a bone marrow transplant, radiation, and immunotherapy which stimulates the immune system to fight diseases.

Samantha, Penny’s mom, was overwhelmed with emotions when she squirted the final immunotherapy drug dose into her daughter’s mouth. “It felt like I was finally allowed to feel the weight of everything we’ve been through.”

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Photo courtesy of Four Oaks Photography.

On January 30, 2019, Nia Mauesby was born. To celebrate her arrival, the setting sun illuminated the Seattle skyline with bright hues of red, orange and yellow. It was one of the most dazzling and memorable sunsets of the year. As quickly as the setting sun dipped over the horizon, the winds began to shift, and the foreboding weather foreshadowed the turbulent journey that lay ahead.

“When my water broke, we had no idea what we were in for,” Reem Mauesby said.

Mauesby and her husband, Timothy, were elated for their daughter’s arrival, but the timing couldn’t have been worse. Stricken with the flu, Mauesby wasn’t able to see her baby girl for 24 hours after giving birth. When Nia was finally was placed on her chest, she felt a heavy sense of relief, but that feeling would soon be stripped away. Read full post »

Liesel Von Imhof will graduate from Harvard with a degree in stem cell biology in May 2021, five years after Seattle Children’s neurosurgeons removed her brain tumor.

As a high school freshman, Liesel Von Imhof had a dream of attending college at Harvard. She packed her schedule with challenging classes and participated in varsity sports such as cross-country running and cross-country skiing. She had occasional, debilitating headaches that sometimes caused her to miss school, but she blamed them on stress, dehydration or low blood sugar.

In July 2016, just before her senior year of high school, Liesel’s dream of Harvard was almost derailed when doctors found the reason for her headaches: a Ping-Pong ball-sized tumor in the middle of her brain.

At the urging of her doctors, Liesel, then age 17, and her parents traveled from their home in Anchorage, Alaska, to Seattle Children’s.

Thanks to the care she received here, the support of her family and friends, and her own determination, Liesel is graduating from Harvard this month with a degree in stem cell biology — her first step toward a career in medicine.

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When Cassie Fannin was 19-weeks pregnant with her first baby, she couldn’t wait for the ultrasound that would reveal her child’s gender. During the appointment, she and her husband, Michael, were delighted as they watched their beautiful baby wiggling around on the ultrasound screen.

Fannin asked the technician, “Is it a boy or girl?”

But the technician’s previously cheerful expression now suggested something was wrong. “I’ll need to check with the doctor,” the technician said while hurrying out of the room.

Moments later, a doctor gave Fannin and her husband the devastating news that changed their lives.

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