This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.
Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service
Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.
Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.
The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.
When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.
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On a Saturday in March, 13-year-old Trey Lauren was playing with his friends at a birthday party when he fell and cut his knee on a nail. It was a typical injury for a kid his age, but what resulted was anything but typical.
Trey was taken to a local emergency room that night, and by Sunday morning his wound had been closed with six stitches. But when Monday morning came, he was too sick with a fever to go to school, and his knee had begun to swell. Trey’s parents, Mark and Randi Lauren, decided to take him to urgent care, where his stitches were removed and he was started on antibiotics. However, later that night, Trey’s fever persisted, and the swelling in his knee had only gotten worse.
One trip to the emergency room later, Trey received an additional dose of broad spectrum antibiotics, and the decision was made to transfer him to Seattle Children’s Hospital. Read full post »
Dr. Ghassan Wahbeh, right, diagnosed Paige Norris, now 14, with Crohn’s disease three years ago.
Paige Norris’s young life seemed to be sailing along with fair winds and sunny skies. At 10 years old she was an enthusiastic tennis player with lots of friends and a stellar academic life – two years ahead in every subject.
But sometime in fourth grade her internal weather shifted, and she developed debilitating abdominal pain.
Her parents felt helpless as doctors downplayed Paige’s symptoms. “It was so frustrating to hear condescending advice like, ‘kids have stomach issues; she’ll get over it,’” recalls Deborah Norris. “But I know my daughter, and she’s not a complainer.”
Paige’s condition worsened as mysterious bouts of vomiting and diarrhea sapped her energy. She stopped growing, lost 20 pounds, and had to quit her favorite sport.
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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 »
At 12 years old, Pepper Snider knew something wasn’t quite right. After a bout of Mononucleosis (mono), Snider began feeling a sense of enjoyment from hunger and started to purposely restrict herself. Years later, a comment from an eighth grade classmate would put everything into focus.
“Look at that roll.”
It was the beginning of a very dangerous journey for Snider, one that would take years to diagnose as anorexia nervosa. Now, at 25 years old, Snider is fully recovered and wants others to know they are not alone in their struggle. Her mission is to help build a community of support and let other people know it is okay to ask for help. Read full post »
Paul Wright dreamed of one day living in Seattle’s bustling downtown and working in one of the many sprawling skyscrapers. But as a boy, it seemed like a near-impossible dream. He was born with a physical disability, arthrogryposis, a condition that prevents joints from moving as much as normal. Doctors thought he would never walk much less live an independent life. Wright has done that and much more, and on June 14, will head back to his alma mater, Western Washington University, for this year’s commencement ceremony. He is one of six 2014 Presidential Scholars that will be recognized for outstanding scholarship and service to the community. Below is Wright’s story, in his own words, from diagnosis at birth to successful business man. Read full post »
Madison’s winning artwork, “Love Life”
Congratulations to Seattle Children’s patient, 18-year-old Madison Gordon, from Goldbar, Wash., who won first place in the American Kidney Fund’s Calendar Kids Art Contest. Her artwork, which she calls “Love Life,” will be featured on the cover of the American Kidney Fund’s 2015 calendar. More than 4,200 people voted and selected Madison’s drawing to be the cover art.
“I was so excited to hear that I had won! It’s amazing and I couldn’t believe it when I heard the news,” Madison said. “I am so happy that my artwork will now be shared with a much bigger audience.”
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Baby Molly Hamilton.
On Feb. 17, 2008, Erin and Bill Hamilton welcomed their daughter Molly into the world. She appeared to be a perfectly healthy, 9-pound baby girl, but a newborn screening test revealed Molly had cystic fibrosis.
“We were devastated,” Erin said. “We didn’t know anything about cystic fibrosis and had no idea how this disease would affect her life.”
Cystic fibrosis is an inherited condition that affects about 30,000 people in the United States. It causes thick, sticky mucus to build in the lungs, digestive tract and other areas of the body. It’s also a disease that has become the life’s work of Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute.
In 1938, when cystic fibrosis was first recognized as a disease, babies with this condition rarely lived past one year. Thanks to researchers like Ramsey, children with this disease can now live comfortably into adulthood.
“It is so rewarding to see how research impacts the lives of these children,” Ramsey said. “My goal is to keep conducting research studies until there are successful treatments for all patients with cystic fibrosis.” Read full post »
In honor of Brain Tumor Awareness Month, former Seattle Children’s patient Nina Garkavi shares her experience of battling a brain tumor as a young adult.
Nina with her dog Oscar at the Run of Hope in 2012
My name is Nina Garkavi and I am now 25 years old. I would have never thought I would be so closely connected to Seattle Children’s Hospital. My family moved to America when I was just 4 years old and I went through my childhood thankfully not needing any of the services that are provided by Seattle Children’s.
After finishing high school in Seattle, I moved to New York City for college. I scored a job on Fifth Avenue right after graduating in 2010 and began working in the big city. While it was all new and filled with busy days, I really felt like this was the start of my new journey and I was climbing up the big New York City ladder. I had to think about a lot of things – how would I afford living in the city? What train would I take to get to work? Where would I do laundry because there wasn’t a machine in the building? All those questions and more were filling up my mind but never did I think about cancer or what I would do if I got it. Not at 22. That was not something I was going to have to worry about…right? Wrong.
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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 »