Nestled serenely in the woods of the Pacific Northwest near Mt. Rainier is a unique camp for kids. Stanley Stamm Summer Camp is week-long, sleepover camp for children with serious illnesses, ages 6 to 14 years old who are patients at Seattle Children’s Hospital. From cystic fibrosis to congenital heart disease, Stanley Stamm Camp can care for children with terminal or chronic medical conditions who may be unable to attend other camps due to their medical needs.
Founded in 1967 by Dr. Stanley Stamm, a Seattle Children’s cardiologist and quiet hero, the camp has transformed since it’s inception to something truly magical and memorable. “The camp started very small, with only a few volunteers,” said Stamm. “Today, we have about 100 campers and more than 200 volunteers. They are truly the spirit of the camp. It’s been nearly 50 years since we started, and it will hopefully continue long after I’m gone.” Read full post »
Brenda Senger and her daughter Tessa.
Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.
“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”
Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.
“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”
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Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.
Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.
Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous. In total, Kathia was taking 20 pills each day.
“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”
Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.
Roadblocks on the road to cures
Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »
Patients at Seattle Children’s Hospital on Saturday were transformed into superheroes, each receiving a personalized cape with their initial sewn into the fabric right before their eyes, thanks to Capes4Heroes, an organization that makes capes for kids with disabilities, life threatening illnesses or kids who just need to feel empowered. There were many different cape designs to choose from, from Batman to bright pink sequins. Each child got to pick their own.
Strength and courage were two abilities the capes helped to bring out in the kids, who often spend a great deal of time in and out of the hospital.
Tricia Bertsch, playroom coordinator at Seattle Children’s, knows all too well how empowering a cape can be to a child. Bertsch’s son, Calvin, who visits Seattle Children’s frequently, wanted to wear his cape 24 hours a day, 7 days a week when he first received it. Read full post »
Last year at my son’s high school graduation, I was overcome by a flood of emotion. Not surprising you might say; all moms get choked up when they see their young adult in cap and gown, on the verge of an important life transition. I started thinking back to when Justin was just a preschooler, and then something caught my eye.
A handful of students were sitting closer to the stage, supervised by teachers. While I didn’t know them by name, I knew them. These were some of the students in the special education classroom that I had just visited a few weeks prior, the classroom where Justin’s younger sister, Carrie, would soon be enrolled..
As Justin was starting preschool 14 years ago, Carrie was diagnosed with severe autism. Her preschool years were filled with numerous therapies and interventions all aimed at helping her to be more able. During those early years, I sought out moms whose kids were a bit older, figuring they’d be a few steps ahead of us in navigating this new world of special needs. Read full post »
Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.
Some moments are so significant the weight of them seems to hang in the air. I experienced this first-hand when cancer survivor Milton Wright III met the people who helped save his young life.
You may remember Wright, the leukemia patient who achieved remission thanks to an immunotherapy protocol designed by Mike Jensen, MD, at Seattle Children’s Research Institute.
Wright is doing well and recently had a chance to meet the scientist who designed his therapy, the technicians who modified his cells and the family whose foundation helped fund his treatment. Read full post »
“Stop talking and start doing.”
The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.
“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”
A little girl makes a difference
Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.
“We need action,” she said during an interview for a cancer awareness documentary. Read full post »
Seattle Children’s clinicians do everything they can to accurately diagnose concussions and recommend the most appropriate treatment. But those tasks are difficult without definitive diagnostic tools to determine when concussions have occurred or objective evidence to prove which treatments are best.
To provide better care, physicians need better research. That is why Seattle Children’s Research Institute has created the Youth Concussion Research Program.
The new program, made possible by a generous $5 million gift from The Satterberg Foundation, is designed to develop new concussion diagnostic tools; measure sports impacts using real-time sensors; and begin clinical trials to determine which concussion treatments are most effective.
“There are so many people who want to know how to prevent concussions and long-term effects,” said Frederick Rivara, MD, MPH, who will lead the Youth Concussion Research Program. “I hope we will soon be able to answer a lot of their questions.” Read full post »
Last fall, 20-year-old Milton Wright III was given a death sentence. Today, he is expected to live a long, healthy life. This is the incredible story of how two determined researchers and the parents of a young boy came together to save him.
On Sept. 18, 2013, 20-year-old Milton Wright III walked into Seattle Children’s Hospital and received some devastating news.
Leukemia. Again. The third time in his young life, to be precise.
Wright wasn’t surprised by the diagnosis. He had been worried his cancer was back and went to the hospital alone to avoid worrying his mom and three younger siblings. Still, the news was paralyzing.
“I really felt like I was coming up in the world,” he said. “I thought I was done with cancer.”
Then the news got worse. Wright’s leukemia had become resistant to chemotherapy. A bone marrow transplant could cure his cancer, but he would have to be in remission first, and that couldn’t happen without chemotherapy. His chances of survival were dismal. Read full post »
Dr. Ed Marcuse, left, and Ruth Benfield, right
Let’s go back…way back, to 1977. The first Star Wars film was released and a gallon of gas cost 65 cents.
That was the year Ed Marcuse, MD, MPH, a young physician who came to Seattle Children’s in 1973, joined the search committee to find a new nursing director for outpatient clinics. Marcuse and the team hired someone with pediatric expertise, leadership potential and passion for Seattle Children’s mission: Ruth Benfield.
Now 37 years later, Benfield, who had become the vice president of Psycho-Social Services, retired on Feb. 3 and Marcuse, medical director for Quality Improvement, will retire one month later.
With their combined 78 years of service, Benfield and Marcuse have left a lasting impression at Seattle Children’s.
But rather than make their retirements a celebration of their careers, they’ve decided to use the occasion to garner support for something they both hold near and dear to their hearts – the Journey Program, a program that helps families cope after losing a child.
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