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 »
Eighteen-year-old Ibrahim El-Salaam, aka “I-Bizzle,” was born with a blood disorder called sickle cell disease and has been coming to Seattle Children’s Hospital for as long as he can remember. His disease has required him to spend a lot of time in the Inpatient Cancer Unit at Seattle Children’s, which houses patients who require inpatient stays for both cancer and blood disorders. When he’s there, he likes to find fun ways to pass the time – like making an “MTV Cribs”-inspired video to show off his pad in the country’s first Adolescent and Young Adult (AYA) Cancer Unit, which opened last year.
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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 »
Each week, poets Ann Teplick and Sierra Nelson arm patients at Seattle Children’s Hospital with a notepad, pen and thought-provoking prompts to help them discover the power, and therapeutic nature, of the written word. Some patients use writing to share their story or process difficult emotions, while others use it to ignite their imagination and go to another place, remembering their life and who they are beyond the hospital walls.
“I approach children and teens by telling them they have important things to say, and that the world needs their stories,” said Teplick. “I ask them if they agree, and time and time again, they reply ‘Yes.’ I then invite them to write from the heart and share something about who they are as a person.”
Teplick and Nelson work with Seattle Children’s patients through the Seattle Arts and Lectures’ Writers in the Schools (WITS) program, which sends professional writers into schools to help students discover and develop their writing ability. About five years ago, WITS added Seattle Children’s as its only non-public school site.
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Twelve-year-old Alan Louie has been in and out of hospitals since he was a baby. Born with kidney disease and renal failure, Alan is no stranger to blood draws, medications and doctors. For him, it has always been a part of his family’s routine. He’s never viewed himself as being sick though, and it’s something his mother, Ann Marie Louie, has always encouraged him to believe: He can do anything.
It only makes sense that Alan’s motto in life would be, “Why not me?” – a phrase he picked up from one of his role models, Seahawks quarterback Russell Wilson.
It’s a message he’d like to pass along to others facing a similar circumstance, one that he believes is especially important now, in recognition of Organ Donor Awareness Month. Read full post »
Julie Kobayashi, a 12-year-old girl from Hawaii, is Seattle Children’s third patient to receive the HeartMate II ventricular assist device (VAD), a device that allowed Julie to leave the hospital while waiting for a life-saving heart transplant. This is her story, from failing heart to transplant.
Julie Kobayashi started feeling sick on a Saturday in November 2013. She felt nauseous, but didn’t have a fever. The symptoms reflected that of the stomach flu. Her family wasn’t overly concerned at first. They thought the symptoms would subside and their daughter would be back to her normal self in no time. For Julie, an active and fun-loving 12-year-old, she usually didn’t let anything slow her down for too long.
When Monday rolled around, Julie felt well enough to go to school. She enjoyed school and had been working really hard practicing her clarinet for an upcoming concert. Missing school wasn’t an option in Julie’s mind. Read full post »
Meet Olivia Rickert and Michile Smith: Two generations apart, but linked forever by their special hands.
When Olivia Rickert was still in utero, an ultrasound at 20 weeks revealed that she had inherited a genetic mutation passed down from her mother and maternal grandmother. In Olivia’s case, the mutation was expressed as a cleft (split) hand. Though most kids born with this condition have no other health problems and can overcome their hand difference naturally or with surgery, Olivia’s mom (Stephanie Rickert) worried it might signal worse news. Stephanie had little outward sign of the mutation, but her mother, Michile Gormley Smith, was born with split hand/split foot absent long bone syndrome — claw-like hands and feet and legs missing tibia bones. (Smith was treated at Seattle Children’s starting in 1958 by pioneering orthopedist Dr. Ernest Burgess.)
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In honor of World Down Syndrome Day, Melanie Harrington shares excerpts from her blog, Our Journey Through Life – a rich chronicle of a baby’s fighting spirit and a mother’s courage to walk “the road less traveled” and arrive a better person.
May 2012: Our world changes forever
We get the call we’ve been dreading: the baby boy I’ve been carrying for 15 weeks has Down syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine or eat foods I’m not supposed to eat. Why me? Why us? I am mad, sad, anxious and confused. Will we be able to love this baby? What does his future hold? Bullying, dependence, frustration? And, what does my 2-year-old son Cody’s future hold? Constant defending? Jealousy?
I’m feeling very un-mommy-like thoughts that I never thought I could feel about my unborn baby. Can I handle this? Can my husband, Chuck? Will our marriage survive? Right now, I don’t know the answer to these questions.
My doctor refers us to a genetic counselor for more testing. I don’t really gel with the first counselor, so she refers me to Seattle Children’s Genetic Counseling Clinic. This counselor immediately puts me at ease and I like her honesty. I also see Dr. Margaret Adam, who is wonderful and gives me lots of helpful information. Dr. Adam reassures me that Down syndrome can affect any family – one out of every 800 babies born in the U.S. has the condition.
June 2012: Grief…then acceptance
I still feel out of control – so desperate to understand what is really happening. I go to sleep and wake up not remembering if the diagnosis is a dream or real, then I remember. We cry a lot and worry all the time. We grieve for the child we thought we were having and we don’t know if we can ever come to terms with the child we are having.
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