Patient Stories

All Articles in the Category ‘Patient Stories’

Transgender Youth Navigating Healthcare: One Family Offers Perspective As Seattle Children’s Researchers Seek Survey Participants

Tai Jordan, right, and his mother Carmen Jordan offer tips for how the healthcare system can accommodate transgender youth.

A clinician stepping out and calling a name into a lobby full of waiting patients may seem like no big deal, but for a transgender youth patient waiting for an appointment, it can cut like a knife.

“When a clinician walks into a room, the birth name on your chart is the first thing they call out,” explained Tai Jordan, a 17-year-old transgender youth. Tai, whose birth name is ‘Tairah,’ was born female, but identifies as male. “If you’re not out yet, or you pass as the gender you identify with and use a different name, the clinician has inadvertently outed you in a public space where you should feel safe.”

Seattle Children’s researchers Dr. David Breland and Dr. Yolanda Evans want to better understand the issues that transgender patients and their families face in healthcare. They have launched a survey for parents of transgender youth patients with the goal of better understanding healthcare experiences and barriers. Families who are interested in participating in this research study can send an email by clicking here or call 206-884-1433 to learn more. The survey takes about 15 minutes to complete and each participant receives a $10 gift card. Read full post »

How 10 Days at Seattle Children’s Changed My Life

When I was 16, I spent 10 days at Seattle Children’s in the Inpatient Psychiatric Unit (now called the Psychiatry and Behavioral Medicine Unit, or PBMU).

I fought it. I hated it. I couldn’t get out of there fast enough.

Looking back three years later, I can tell you that those were the most important 10 days of my life. If not for my time at Seattle Children’s, I’d probably be in jail now, or dead.

Everyone on the unit met my resistance with compassion – and somehow, they got through to me. Even though I fought being in their care, they cared for me. They cared about me.

I left Seattle Children’s with medications that helped me and coping skills I still use today. Read full post »

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

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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 »

Patients Who Benefited From Life-Saving Heart and Lung Machine Celebrate With Reunion

Jude Xenakis, 10 months, came to Seattle Children's for ECMO when he was born with severe meconium aspiration.

Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.

This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.

“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).

Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. 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

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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 »