Patient Stories

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Healing Through Art

Art therapist Rosalie Frankel with 11-year-old patient Jaylin Israel-Tompson

Art therapist Rosalie Frankel with 11-year-old patient Jaylin Israel-Tompson after completing an art therapy session

Twelve-year-old Selphie Luann Enderle has been in and out of Seattle Children’s Hospital since she was 3 years old for treatment of cystic fibrosis. While the long hospital stays can be difficult, there is one activity that she always looks forward to – her art therapy sessions. The joy these sessions bring her is evident by her reaction to the sight of art therapist Helena Hillinga Haas approaching her hospital room with a colorful cart in tow, overflowing with markers, crayons and construction paper.

“You’re here!” she exclaims as she jumps out of bed, throwing her hands in the air and running to the door. “I’ve been waiting.”

Selphie is one the many patients at Seattle Children’s who benefit from the unique therapy that compliments traditional medicine by providing patients with a creative outlet to express themselves, process emotions and reconnect to the playfulness of childhood. As art therapists, Hillinga Haas and Rosalie Frankel are trained to develop patient’s art skills while also focusing on their emotional needs.

“We work to address the mind-body connection and aid in the healing process by helping our patients relax and express their emotions in an enjoyable way,” said Frankel, who began the art therapy program at Seattle Children’s 15 years ago. “Our goal is always to help our patients find moments of comfort by providing them with this cathartic outlet that also often serves as a welcomed distraction.” Read full post »

Patient Shares Food Allergy Study Experience to Highlight New Web Hub For Seattle Children’s Research Studies and Clinical Trials


Isabelle Thomelin hopes that by participating in a clinical research study for her severe peanut and tree nut allergies, she can help researchers find effective therapies.

Families, patients and providers can now browse our clinical research studies at the newly-launched Seattle Children’s Research Studies and Clinical Trials Web Hub.

When a family is in a rush to get dinner on the table, maybe mom or dad will order pizza, grab healthy greens from the salad bar or hustle home with prepared food from the deli. But when the Thomelin family is considering dinner, they have to think about every single ingredient they bring into the kitchen. Their youngest daughter, 9-year-old Isabelle Thomelin, has severe allergies to peanuts and tree nuts.

Isabelle is enrolled in a clinical study at Seattle Children’s that may reduce her allergic reactions. The study will test an immunotherapy technique and a designer medicine to see if they allow Isabelle’s body to safely tolerate peanuts and tree nuts in gradually increased doses. Read full post »

NIH funds $490,000 for Muscular Dystrophy Research in Zebrafish; Family Hopes for Cure

Nick Olson, 7, comes to Seattle Children's for Duchenne muscular dystrophy treatment.

Nick Olson, 7, comes to Seattle Children’s for Duchenne muscular dystrophy treatment.

Tiny, sleek zebrafish could hold the key for how we treat muscular dystrophy in the future. Dr. Lisa Maves, a researcher at Seattle Children’s Research Institute, has received a grant from the National Institutes of Health to study drug combinations in zebrafish for Duchenne muscular dystrophy. It’s one of the most common forms of muscular dystrophy and affects males almost exclusively. The condition, caused by a genetic disorder of the X chromosome, gradually weakens the body’s muscles and occurs in about 1 out of every 3,500 boys.

Nick Olson is 7 years old—a redhead with a toothy smile and a stuffed animal named Puppyroni by his side. Nick has Duchenne muscular dystrophy. What does a little boy like Nick have in common with a zebrafish swimming in a tank? Genes. Zebrafish are perfect subjects for muscular dystrophy research because the same genes that caused muscular dystrophy in Nick cause it in zebrafish, too. Read full post »

New South Clinic Opening Offers Child with Cerebral Palsy a Second Chance

Omari Henry - Web

Omari Henry, 7, at Seattle Children’s South Clinic.

Cynthia Gordon was just 25 weeks into her pregnancy with her son, Omari Henry, when she fell to the floor of her home, seizing uncontrollably. She was rushed to the hospital and Omari was born a short time later.

Thankfully, both mom and baby made it through the delivery, but not without some complications. Omari suffered brain hemorrhaging from the stress of the birth, and he was diagnosed with cerebral palsy.

When Omari was 3 years old, Gordon found Seattle Children’s Federal Way Clinic, which offered occupational therapy and physical therapy. There, Omari made huge strides, but eventually, he needed services the clinic couldn’t provide anymore. Read full post »

Alternative to Steroids and Medication, Novel Diet Helps Teen Overcome Crohn’s

Avi Beach

Avi Shapiro, 15, on a beach in New York, weeks after starting novel diet.

When Avi Shapiro, 15, began complaining of an ache in his stomach, the last thing his mother thought could be the cause was a chronic disease. But after several trips to the doctor, that’s exactly the diagnosis they received.

“I thought the tummy ache would go away, or that maybe he was lactose intolerant,” said Ingrid Elliott, Avi’s mother. “My next thought was, ‘If it’s anything, I hope it’s celiac disease.’ I know how to deal with that. I am gluten intolerant so I know it’s something we could treat with diet.”

After multiple visits to see their pediatrician and a trip to Seattle Children’s for an endoscopy and a colonoscopy, the results were confirmed. Shapiro’s intestines were severely inflamed. He was diagnosed with Crohn’s disease, a form of Inflammatory Bowl Disease (IBD). Read full post »

Born with Bladder Outside His Body, Little Boy Helps Others with Rare Condition

Mick as baby - black and whiteWhen Mick Hullinger was born, the atmosphere in the birthing room was not what Leah Hullinger, a first time mother, had envisioned. Although all the ultrasounds had come back normal, as soon as Hullinger’s baby was placed on her chest, she realized something was wrong. Mick was born with bladder exstrophy, in which the bladder doesn’t grow correctly and sticks outside the abdomen, a rare disorder that happens in about 1 in 30,000 babies.

Mick was whisked away by ambulance to a specialty hospital in Salt Lake City, where the family lived.

“It was a whirlwind,” said Hullinger. “I checked out of the hospital only 12 hours after giving birth. I needed to be by his side. I never pictured this would happen; it’s not what you imagine when you’re having a baby.” Read full post »

Preserving Hope for Young Cancer Patients to Have Families in the Future

Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.

Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.

A new study published today in Cancer and led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma. Read full post »

Team Work and Unique Drug Protocol Help Aaden Beat the Odds

Aaden Adams with his parents, Cheree and Andrew Adams

Aaden Adams with his parents, Cheree and Andrew Adams

Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.

“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”

“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”

Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.

“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »

Lactation Consultants Help New Moms When They Need It Most

Juliette, who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children's lactation consultants.

Juliette (right), who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children’s lactation consultants.

Everything went perfectly when Amanda Erickson’s first baby was born. Bennet arrived right on time on March 11, 2012, healthy and eager to nurse.

Exactly two years later – on March 11, 2014 – Bennet’s sister, Juliette, came into the world. This time, says Erickson, “it was an adventure birth.”

In other words, nothing went as planned.

Juliette had been diagnosed before birth with a serious heart problem, and Erickson planned to deliver at the University of Washington Medical Center so her baby could get to Seattle Children’s right away.

“We knew she wouldn’t be able to breathe on her own,” says Amanda. Read full post »

Smaller Artificial Heart Valve Saves Sadie’s Life; Offers Promise for Kids Everywhere

Lee'or, Sadie and Wendy Rutenberg

Lee’or, Sadie and Wendy Rutenberg

Lee’or and Wendy Rutenberg knew that their baby daughter, Sadie, was going to be born with heart problems. Ultrasounds showed that the walls between her heart’s atria and ventricles were not forming correctly. But they didn’t think it would be a problem for Sadie right away.

“Most children with conditions like Sadie’s don’t need surgery until they are 2 or 3 years old. We thought we’d have two or three years of relatively normal life before we’d have to do all of this,” Lee’or Rutenberg said as he gestured toward his daughter’s bed at Seattle Children’s Hospital.

Unfortunately for the Rutenbergs, Sadie’s heart problems were more complex than expected. The only option for her was a type of pediatric heart valve that is currently in clinical trial. Sadie would become the first child in the U.S. to receive the valve as part of the HALO U.S. IDE Trial, which is testing the safety and efficiency of the St. Jude Medical Masters HPTM Series 15mm mechanical heart valve. Read full post »