Patient Stories

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Researchers look forward to 2014: Preventing cleft lip

Jessica Schend, now 17, was born with a cleft lip and palate. She has been treated at the Seattle Children's Craniofacial Center her entire life.

Jessica Schend, now 17, was born with a cleft lip and palate. She has been treated at the Seattle Children’s Craniofacial Center her entire life.

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.

Cleft lip is one of the most common facial malformations in the world, affecting one in 700 children. Still, few researchers focus on this condition. But craniofacial scientist Timothy Cox, PhD, is leading efforts at Seattle Children’s Research Institute to determine how cleft lip might be prevented in the future.
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Researchers look forward to 2014: Saving lives with SCID screenings

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

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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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Looking beyond face value: How one patient learned to embrace herself

At age 4, Natalie Merlo was diagnosed with a facial condition that left her feeling self-conscious and very different from other people.  While growing up, she even avoided having her photo taken.  Through the work with her care team at Seattle Children’s Craniofacial Center, Natalie has gained confidence, has happily accepted who she is and has a powerful message for others – “it’s OK to be different.”

Natalie, now 18 years old, recently entered college with a new facial structure and a new outlook on life after completing two major surgeries. For most of her life, Natalie lived with a severe under bite and deep, wide-set eyes and cheek bones, as a result of a genetic condition called Crouzon Syndrome. While her features were typically brushed off by strangers, it still affected the way she thought about herself.

“These differences were things other people glazed over, and didn’t really notice at first glance,” said Natalie. “But to me, they were so unfortunately obvious. I wish I could say that I didn’t let these things phase me, but that was far from the truth.”

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Visit with Macklemore helps 6-year-old heart patient recover

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Courtesy Jordan.Nicholson.Photography.

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore.

“The luckiest or unluckiest boy”

Before he became ill, AJ’s mom Yoo-Lee Yea said he was an especially social first-grader and a frequent jokester. But on the morning of Nov. 12 he was quieter than usual. Later that day AJ threw up at school and by the evening he had a high fever. AJ’s primary care doctor said he likely had a virus and should feel better in a few days. Read full post »

Seattle Children’s to speed up medical research with national network

research_fileThe 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 »

Santa visits Children’s to spread Christmas cheer

SantaVisit2013 014Being sick is never fun for a child, and spending time in a hospital can be especially difficult for families during the holidays. Children sometimes wonder if Santa will be able to find them come Christmas day. But at Seattle Children’s, there’s no need to worry. Every year, Santa makes a very special visit to Children’s – it’s one of his favorites stops along his Christmas route!

With Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donder, Blitzen and Rudolph all safely parked atop the roof, Santa spreads Christmas cheer for all to hear, his jolly laugh echoing through the halls of Children’s. And thanks to Santa’s trusty elves, every child receives a present chosen just for them. It’s just one of the many ways Children’s helps families feel more at home for the holidays and cope with being in the hospital on Christmas. Read full post »

Patients at Children’s pick perfect presents in the playroom

BreannaClose_webOnce a year, the patient playroom at Seattle Children’s transforms. Usually it’s a place for patients to have fun and play with toys and games. But last Thursday, volunteers and Child Life staff members turned the room into every kid’s fantasy – a toy store where absolutely everything is free.

Every holiday season, Children’s partners with the Starlight Children’s Foundation to host this holiday shopping party for patients.

It’s just one of the many ways Children’s helps kids and their families cope with being at the hospital during the holidays. Read full post »

Sophie gets a new heart and perspective on life after 40 days and 40 nights

SophieSCHThe holiday season is a time where family and friends come together and often reflect on what they are most thankful for. It’s a time of celebration and joy, and for some, it’s also a time to give back.

For 17-year-old Sophie Kuniholm, this time of the year is a combination of all those things. She’s thankful for her health, the support of her family and the ability to give back to others. But most importantly, she’s thankful for her heart, both literally and metaphorically. Read full post »

Richard Sherman surprises kids at Children’s with a special visit

Sherman&FamilyLast night, Seahawks cornerback Richard Sherman and his brother Branton Sherman surprised patients, families and staff at Seattle Children’s Hospital with a very special visit. Unable to attend “Blue Tuesday,” Sherman said he didn’t want to miss out on seeing the kids. He drove to the hospital right after practice with his brother in toe to pass out Seahawks pillow pets.

Just as patients, families and staff at Children’s thought they couldn’t get any louder and prouder to be a part of the 12th man, Sherman proved why Seattle is home to the best and most generous team in the NFL. Our 12th man flag is proudly waving at the entrance of the hospital for all to see. Go Hawks!

 

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Patients say thanks to Russell Wilson and Ashton Wilson in their own special way

Patients, families and staff at Seattle Children’s Hospital surprised Russell and Ashton Wilson with a very special gift this week to say thank you for all they do for the hospital. We wanted to share with you the story behind our “thank you.”

Every Tuesday at Seattle Children’s Hospital something miraculous happens. Walk through the halls adorned with woodland creatures and colorful murals and you will see a common, unexpected theme emerge among patients, families and staff – the color blue.

Blue Friday may be the day Seattle’s 12th man showcases their Seattle Seahawk pride, but at Children’s, every Tuesday is Blue Tuesday. Read full post »