Genetic testing helped diagnose Nolan Wood, 3, with KCNQ3 epilepsy.
Even though Nolan Wood hadn’t experienced a seizure in more than two years, his parents still had questions about their son’s future.
“We wondered if there were others out there that have what Nolan has,” said Emily Wood, Nolan’s mom. “If so, what does their life look like?”
The Woods’ search for answers began when Nolan, 3, was diagnosed with infantile spasms and regression of his motor skills when he was 6 months old. Before receiving seizure medications, Nolan had hundreds of daily subtle, reflex-like seizures. Due to the regression of his motor skills, he had stopped rolling over, smiling and crying. A condition known as cortical visual impairment had also rendered him legally blind. Read full post »
It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.
“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”
Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.
It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.
Read full post »
Lillee Haynes, 4, surrounded by her three older brothers.
When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.
“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”
Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.
“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.” Read full post »
Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.
For the first 15 years of his life, Ryan Wyckoff appeared to be a perfectly healthy, active teenager, living with his family in Wasilla, Alaska.
But during New Year’s weekend in 2009, Ryan began to feel seriously ill. He was lethargic and had a high fever that could not be controlled by acetaminophen.
Ryan was so sick he could barely make the trip to his family doctor. The doctor thought Ryan looked jaundiced and referred him to their local hospital, but providers there found nothing wrong so they sent him home.
Ryan’s symptoms worsened. He gained 15 pounds in just a couple days as fluid built up in his abdomen. Ryan’s mom, Lisa Wyckoff, remembered how her tall, slender son looked like he was pregnant.
An MRI revealed Ryan had cirrhosis — advanced scarring in his liver. His condition was life-threatening, so he was flown to Seattle Children’s by Medivac.
“It’s terrifying to have something seriously wrong with your son that no one can figure out,” said Lisa. “We felt so helpless.” Read full post »
Hudson received a portion of his uncle’s liver in July as part of a living donor liver transplant.
Jordan and Morgan Hill carry with them everywhere a custom-made coin inspired by their son’s liver transplant and the man who saved his life.
Morgan had the coin made weeks before his older brother, United States Army Special Operations Command Lt. Col. Trevor Hill, flew to Seattle from his home in North Carolina to donate part of his liver to his 8 ½-month-old nephew, Hudson.
“My brother saved our son’s life,” Morgan said. “Trevor has had what is called a challenge coin throughout his military career. It’s a sign of respect. It’s a symbol of someone’s unit and their life, and I wanted him to have one representing the incredible gift he gave us.” Read full post »
18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.
Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.
“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”
Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »
The 2017 Family Choice Award recipients (clockwise): Dr. Jimmy Beck, Dr. Nina Natarajan, Dr. Tim Savage and Alicia Sevilla.
When families feel like their child’s care team is putting them first, they remember it.
At least that’s the case for more than 250 people who submitted nominations for Seattle Children’s 2017 Family Choice Awards. Each nomination came with a heart-touching story about a special staff or faculty member whose commitment to family-centered care sustained a family in the most difficult of circumstances.
The nominees were narrowed down to three winners by the Family Advisory Council, and Seattle Children’s pediatric residents also selected one of their peers for the Family Centered Care Award.
Read on to learn how this year’s award recipients – Dr. Jimmy Beck, Dr. Nina Natarajan, Alicia Sevilla and Dr. Tim Savage – make a difference in patient’s lives every day. Read full post »
Dr. Todd Cooper leads Seattle Children’s High-Risk Leukemia Program.
Seattle Children’s is getting set to launch a program that will redefine how we care for children with “high-risk” leukemia – or leukemia that doesn’t respond well to standard treatments and/or has relapsed after therapy.
Unfortunately, less than 40% of children with high-risk leukemia will live for more than four years after they’re diagnosed. Our new High-Risk Leukemia Program aims to cure more of these children by uniting their doctors onto one team, and by using state-of-the-art diagnostic tests to match kids with the latest treatments and clinical trials. The program will also partner with researchers to pursue new treatments and cures.
The first-of-its-kind program is expected to attract patients and families from across the country, and it’s being led by Dr. Todd Cooper as part of his lifelong mission to improve care for children with high-risk leukemia. On the Pulse sat down with Cooper to learn about how the new program will transform care and bring new hope to children and families. Read full post »
Atticus Gwilliam was diagnosed with a brain tumor in August 2016.
September is Childhood Cancer Awareness Month. But What does ‘awareness’ really mean?
To become aware? To obtain new knowledge? To gain a new perspective? To become informed? To become concerned or even empathetic to an unfamiliar situation?
The concept of awareness can take on many faces, and its perception can change depending on the person you talk to. To the mother who spends her days at a children’s hospital, it’s a sense of defeat and desperation about the path that life has taken her. To the father who lost his son, a harrowing and solemn reminder of a fierce battle once fought. To the general social media patron, it may be a month of raw images that they don’t fully understand.
This was the crossroad we found ourselves in as we entered the doors at Seattle Children’s Hospital 12 long months ago. The world of childhood cancer was not something that was on my radar as a mother of three (with one on the way), let alone with regards to one of my own children. Read full post »
Dr. Kaalan Johnson leads his team through a surgical simulation
Erin McCloskey, 11, has been a regular at Seattle Children’s her entire life. First diagnosed with a rare heart defect, a genetic specialist at Seattle Children’s later discovered she had fibrodysplasia ossificans progressiva (FOP). FOP is a complex condition that turns tissue, ligaments and tendons into bone that is outside the typical skeletal structure. Eventually, a person’s joints lose their mobility and it can cause breathing, movement and eating difficulties.
In August, Erin’s mother, Suzanne, sat with her in her hospital room as she did almost every minute of every day since April. Erin’s bed was stacked with stuffed animals and cards sent from members of the online FOP community who showered her and her family with support.
Read full post »