Trevor was born with rare disease called maple syrup urine disease. Seattle Childrens transplant program is one of six centers in the country to offer transplantation for children with MSUD.
Only a week after giving birth to twins, a girl and a boy, in July of 2008, Annette Cole’s world was turned upside down. Something was wrong with her baby boy, Trevor Clemons. In his first couple weeks of life he was lethargic, irritable and couldn’t keep any food down. She was overwhelmed with fear as doctors delivered the difficult news.
The diagnosis felt as unreal as the name of the disease sounded: maple syrup urine disease (MSUD).
“We couldn’t believe it,” said Cole. “When we first found out about the disease, we had never heard of it before. We didn’t know what to expect. We didn’t know anything.” Read full post »
Posey-Grager signs a children’s book for a young patient.
The halls of Seattle Children’s Hospital are a familiar place to Joell Posey-Grager, Miss Seattle 2016, and her family. Now 24, before she was wearing crowns and singing to audiences, she was a patient at Seattle Children’s.
Recently, she returned to the hospital not as a patient, but as a visitor to help brighten the day for other patients like her. With a little help from two very special guests, RJ Mitte, from the popular television show “Breaking Bad”, and Romi Dames, from Disney’s “Hannah Montana,” that’s exactly what they did.
Posey-Grager has always wanted to give back to the hospital that saved her life. Like the patients she visited in the inpatient playroom at Seattle Children’s, she understands the challenges of being in the hospital as a child so what better way to spread cheer than with a glittering crown and a story of hope. Read full post »
Nina was at Seattle Children’s selling her art to raise money for the hospital when a chance encounter reunited her with Dr. Richard G. Ellenbogen, the doctor who performed her life-saving operation.
Neurosurgeon Dr. Richard G. Ellenbogen and his former patient Nina Jubran share two important skills: As a surgeon and an artist, they both have great attention to detail and hands that are used to doing very delicate work. They also have another profound connection: Ellenbogen saved Nina’s life 12 years ago today when she came in for neurosurgery to remove a dangerous brain tumor.
Nina, 22, is an artist and a student at the University of Washington studying sociology. In her spare time, she makes and sells delicate clay figurines like miniature scenes of penguins fishing, ornate bouquets and families of teddy bears. To thank Ellenbogen for saving her life, Nina made him clay figurines 12 years ago of a teddy bear and puppies that still sit on his desk.
Recently, Nina was at Seattle Children’s selling her figurines to raise money for the hospital when a chance encounter reunited her with the doctor who performed her life-saving operation. Ellenbogen was having a busy day with surgeries, and he went out for a quick cup of coffee before heading into his next operation.
“When I saw Nina, my heart skipped a beat,” Ellenbogen said. “It made my day to run into a former patient. I am so proud that she is out there being successful and doing what she loves. That is what drives me as a doctor.” Read full post »
Juliana Graceffo, 11, has type 1 diabetes. She must test her blood sugar throughout the day and take carefully calculated doses of insulin.
Children with type 1 diabetes and their families have to do several calculations throughout the day to stay healthy. Did my daughter check her blood sugar before breakfast? Does she need an extra snack because she has gym class? Is there someone at school to help my child check her blood sugar?
Type 1 diabetes is an autoimmune disease that injures the insulin-producing cells in the pancreas and leads to a lifelong requirement of daily insulin injections. It is a considerable burden of care on patients and parents, who effectively never get a rest from the demands of staying healthy and safe.
At only 8 months old, Lincoln Seay, has spent the majority of his short life inside the walls of hospitals. This week, however, marks the start of a new chapter: he is finally going home, or at least he’s one step closer to his home back in Alaska.
Only 21 days after receiving a life-saving heart transplant at Seattle Children’s Hospital, Lincoln was discharged from the hospital with a new heart and a new lease on life.
“We’re so excited,” said Rob Seay, Lincoln’s father. “As a family it’s been a big celebration since we were discharged. We’re finally all under one roof again. It’s a tremendous blessing.” Read full post »
In honor of World Kidney Day, On The Pulse shares the inspirational story of 5-year-old McKinley Miller who was born with just one kidney that did not develop normally. “She’s our little miracle,” said McKinley’s mother, Jennifer Miller. “We want other people to know there’s always hope. All you have to do is look at McKinley and see what she’s overcome.”
When Jennifer Miller learned she was expecting twins she was overjoyed. Unfortunately, Miller’s joy quickly turned to uncertainty. At her 20-week ultrasound, Miller was told something was wrong with one of the babies.
“I could tell they were looking for something that wasn’t there,” said Miller. “I knew something wasn’t quite right.”
Baby McKinley was prenatally diagnosed with kidney disease and was missing one kidney. She suffered from a rare combination of complex developmental problems affecting multiple organs in her body, including her kidneys, heart and rectum.
“We chose to stay positive,” said Miller. “We were told we may lose her, but I refused to focus on that possibility. I kept focusing on having both my babies.” Read full post »
Watch little Alexis (Lexi) Melton, 7, Irish dance across a stage, or effortlessly ski down a slope, and you would never guess the hurdles she’s had to overcome in her short life.
When Lexi was born, her family didn’t know if she would survive. Her extremely rare craniofacial condition literally makes her one in a million. But her story isn’t one of heartache, it’s a story of hope.
Lisa Skylynd, Lexi’s mother, never let anything hold Lexi back, not even her complex medical condition. She always told her,
“If you want to dance, you should dance. If you want to run, you should run.”
And that’s exactly what she’s done.
“Lexi is not only alive today because of the care she received at Seattle Children’s; she’s living her life to the fullest,” added Lisa. Read full post »
Just shy of his third birthday, little Bowen Warren has already lived up to his name, which literally means “little warrior, small victorious one.” He’s had to overcome a lot in his short life, and that journey has been as his name would suggest: a battle.
In February of 2013, Emily Warren was 29 weeks into her pregnancy when her water broke unexpectedly. Until that point, she had no reason to suspect there was anything wrong with her baby. She could have never imagined the nightmare that was about to unfold. Read full post »
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.