Patient Stories

All Articles in the Category ‘Patient Stories’

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 »

One Family’s Journey Across the Country to Treat Daughter’s Epilepsy

This week, in honor of Father’s Day, we’re sharing the story about James Marvin and his family’s incredible journey to find treatment for their daughter’s epilepsy.

Marvin family Newport RI Aug 2005

The Marvin family

Imagine living every day of your life waiting for your child to have their next seizure. This is often the reality for parents of children with intractable epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is plagued by uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be.

This scenario is something with which James Marvin and his wife Joana are all too familiar. When their daughter, Charlotte, was diagnosed with epilepsy after having her first seizure at just 14 months old, this became their family’s world.

“We called it ‘the antagonist,’” said Marvin. “Charlotte would usually have a seizure every couple of days, but any time she was stressed, tired or sick, the antagonist would come out. It was so difficult to live our lives just waiting for the other shoe to drop, and there was no end in sight.”

That was, until five years later when they traveled 3,000 miles from their home in Virginia, to seek treatment at Seattle Children’s Hospital that held the promise of ending Charlotte’s seizures, hopefully for good.

Read full post »

Teen Wishes for a Heart for His 16th Birthday

Jacob Riley Smith - Web

Jacob Smith, 16, from Mukilteo, Wash.

Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.

“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.” Read full post »