Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.
Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.
So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.
Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.
When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.
As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.
Josie, with her father, Luis, first came to Seattle Children’s when she was 2 months old.
Josie came to Seattle Children’ Emergency Department when she was 2 months old after acquiring a virus and going into respiratory distress. She was also in the beginning stages of heart failure.
Statistically, she was lucky to have made it that far.
Before birth, Josie was diagnosed with Trisomy 18, a life-threatening condition caused by an extra chromosome that disrupts the typical pattern of development in significant ways. Only about 5 to 10% of children with Trisomy 18 survive beyond their first year of life.
“I didn’t expect her to live that long,” said Josie’s mother, Jenny Castillo. “I hoped we would at least have a few days or weeks with her, and we’ve been thrilled with all the time we’ve had.” Read full post »
Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.
In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.
Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”
“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »
I am deeply alarmed by the American Health Care Act (AHCA) that was passed in the House of Representatives because it puts the health of our nation’s children at risk. As I think about how the bill jeopardizes healthcare access for the more than 30 million children in the country and more than half of the children in our four-state region who rely on Medicaid, I can’t stand idly by.
It’s for this reason I went to Washington D.C. last week to urge our region’s elected officials, from Washington, Alaska, Montana and Idaho, to continue the tradition of fighting for the health and well-being of children irrespective of their condition, disease or parents’ financial status. And I am asking you to join me in making your voices heard.
Anxiety is a natural response that alerts people to situations that they find threatening. Anxious feelings are a part of life for kids, teens and adults, but when anxiety is severe, frequent and lasts for months, it requires professional treatment. Dr. Kendra Read, attending psychologist on Seattle Children’s Psychiatry and Behavioral Medicine team, works with kids and teens with anxiety disorders, helping them identify their anxiety triggers and learn how to control their worries and fears.
“Research shows that once anxiety becomes problematic, most kids do not just grow out of it,” said Read. “In fact, left untreated, anxiety can result in problematic long-term consequences that impact academic achievement, employment, substance use, and development of additional psychological disorders, such as depression.” Read full post »
Through Seattle Children’s Pediatric Pain Rehabilitation Program (PReP), physical therapist Sharon Yurs challenges Wesslee Holt to a game of hoops, with some extra balance work added in.
Last spring, Wesslee Holt rolled his ankle at his middle school in Shelton, Washington. The 12-year-old is a dedicated member of his cheer team and was eager to return to the squad quickly. He followed his doctor’s instructions to immobilize the foot and wear a boot — but his pain only increased over time.
Wesslee started using a scooter to keep weight off his foot and rested it as much as possible. Nothing seemed to work. His skin became splotchy and red, and was so sensitive to touch that he couldn’t put a sock or shoe on. He felt depressed and anxious, pulled out of cheer team completely and even left school.
His mother, Steph Fyfe, knew it was time for a different approach. “People wanted to put Wesslee on supplemental security income and call him disabled, but I knew there had to be a way for him to get better,” she said.
She was referred to Seattle Children’s Pain Medicine Clinic and learned Wesslee was suffering from complex regional pain syndrome (CRPS), which sometimes accompanies a routine injury and causes the nerves to send extreme pain messages to the brain. The good news is that Seattle Children’s was able to offer Wesslee a unique treatment option: the Pediatric Pain Rehabilitation Program (PReP).
Jay waits for his appointment at Seattle Children’s Gender Clinic
Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.
Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.
Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.
Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.
“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”
Alexis, a 7 year-old vascular anomalies patient from Indiana
By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.
Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.
The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.
Adorned in pastel blue smocks with smiles from ear-to-ear, it can be easy to spot a Seattle Children’s volunteer.
From the volunteers that do arts and crafts with patients in the playroom to those who deliver key items to patient rooms and refill coffee pots for medical staff, every volunteer at Seattle Children’s is significant in helping to keep the hospital running smoothly each day.
Just last year, volunteers donated over 120,000 hours of service, which highlights the commitment of the more than 500 individuals who serve Seattle Children’s every month.
In honor of National Volunteer Week, Seattle Children’s is showing gratitude to its volunteers by sharing the stories of six individuals who have generously donated their time to strengthen the organization’s mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.
Anxiety is a natural response that alerts people to situations that they find threatening. Anxious feelings are a part of life for kids, teens and adults, but when anxiety is severe, frequent and lasts for months, it requires professional treatment. 
