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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Christal Hays, of Anchorage, Alaska, is only 18 years old, but she is wise beyond her years. A former patient of Seattle Children’s Hospital, Hays has been through a lot in her life. Diagnosed with genetic nephrotic syndrome and heart disease at only 8 months old, she had a kidney transplant and underwent open heart surgery at Seattle Children’s and grew up traveling to and from Seattle for treatment. For Hays, her untraditional childhood was normal. And from this experience, she has a message for others, “You are more than your disease.”
It’s a message that is now inspiring others on a national level thanks to an essay she decided to share with the world. Read full post »
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 »
In honor of American Heart Month, we are sharing Gabrielle’s incredible journey from sick baby to healthy toddler.
Christen Simon was 18 weeks into her third pregnancy when a routine ultrasound revealed the unthinkable: a serious birth defect. The daughter that Christen and her husband would call Gabrielle would need a heart transplant soon after birth.
“At that point I was in shock,” said Simon. “I didn’t know heart defects existed before that point in time. It wasn’t even in my scope of possibilities, not for my daughter.” Read full post »
The heart that connects Rachel Cradduck to a family in Mexico was transplanted into her son Ethan Robbins at Seattle Children’s Hospital when he was just five months old. It came from a baby who died in a California hospital after her family traveled there for medical care.
“A heart transplant is a bittersweet thing,” says Rachel. “During Ethan’s transplant and every day since, I have been deeply aware that another family suffered a tragic loss. I wanted to thank them for the incredible thing they did.”
Rachel had her chance last fall – about a year and a half after Ethan’s transplant – through a unique video teleconference arranged by Seattle Children’s Heart Center and Telemedicine teams at Children’s, and on the other end by Sierra Donor Services (SDS), the Sacramento-based organ procurement organization that helped facilitate the transplant. Read full post »
In 2014, the Seattle Children’s Research Institute will implement life-saving projects, begin new studies to keep children safe and continue searching for ways to prevent and cure diseases that threaten some of our youngest patients. We are celebrating the New Year by highlighting some of the work that has researchers excited about 2014.
Looking forward to saving lives
Evelyn Tomlin was born April 16, 2013. Doctors in Oregon did not know that she had SCID until she was 3 months old.
On Jan. 1, years of work by Children’s research and clinical staff came to fruition when a test for Severe Combined Immunodeficiency (SCID) was added to Washington’s newborn screening panel for all babies born in our state. Known as the “bubble boy” disease, SCID is a group of inherited disorders that cause severe abnormalities of the immune system. Babies with this disease often show no symptoms at birth, but after a few months they are unable to fight infections. Common illnesses, such as the flu or an ear infection, can be life-threatening for a child with SCID.
“Babies with SCID benefit from their mom’s immune system at birth, but once that goes away they have very little ability to defend themselves,” said Troy Torgerson, MD, director of Children’s Immunology Diagnostic Lab.
If caught early, more than 90 percent of SCID cases can be cured with a bone marrow transplant or gene therapy. But once a baby contracts an infection, survival rates drop to 50 to 60 percent.
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The faster medical research moves the more quickly cures can be found for countless children’s diseases. But one of the greatest delays researchers face when trying to solve medical problems is finding enough patients to study.
“Enrolling patients in a clinical trial to study a rare condition could take years,” said Mark Del Beccaro, MD, a researcher and vice president of medical affairs at Seattle Children’s.
But now a federally funded non-profit has awarded Children’s and seven other pediatric hospitals funding to create a national network of patient data with the goal of speeding up medical research and improving patient care. Read full post »
Montana teen becomes first patient at Seattle Children’s to receive the HeartMate II ventricular assist device (VAD) and a heart transplant while being supported with an implantable VAD. He is also the first patient at any pediatric hospital in the Pacific Northwest to leave the hospital with a VAD while waiting for a heart transplant.
The HeartMate II Ventricular Assist Device
Adam Kingsbury went to see his family doctor for what he thought was a bad cold. It was there that Adam, a 16-year-old from Stevensville, Mont., was diagnosed with asthma and sent home with a prescription for an inhaler and orders to take it easy.
After a few weeks, Adam’s symptoms didn’t improve. He was having trouble breathing so his mom took him back to the doctor where it was discovered that Adam had an abnormal heart rhythm. At age 5, Adam was diagnosed with myotubular myopathy, a condition that makes the heart muscle weak. Because of this, his care team knew it was extremely important to find out what was causing the abnormal heart rhythm right away.
The clinic called Seattle Children’s Montana-based pediatric cardiologist Bruce Hardy, MD to examine Adam’s heart. An echocardiogram revealed that Adam was suffering from cardiomyopathy, a condition which causes the heart to lose its pumping strength. Adam’s heart was failing and he would likely need a heart transplant. Within three hours of seeing Dr. Hardy, Adam and his mom, Kate, were on a medical transport plane to Children’s main campus in Seattle where Adam’s condition could be best treated. Read full post »
This past weekend, baby Poppy Dahl from Belgrade, Mont., celebrated her 6-month birthday. This was a major milestone day for Poppy and her family – Poppy survived and is now home with her family after fighting for her life due to a life-threatening heart condition, hypoplastic left heart syndrome. She was diagnosed with the condition before she was born.
A program by Seattle’s KOMO 4 News which aired on Poppy’s half-year birthday, documents Poppy’s story of survival as her family and the teams at Seattle Children’s Hospital and UW Medicine do all they can to give Poppy a fighting chance.
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