In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.
From as early as Torin could remember, they used writing as a way of expressing emotion.
“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”
Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.
Each individual should have the power to create their own story and be true to themself.
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Seattle Children’s patient Andrew Peterson with Dr. Ghassan Wahbeh and nurse Teresa Wachs on the day of his Eagle Scout Court of Honor ceremony.
The numerous merit badges adorning 17-year-old Andrew Peterson’s olive green Boy Scout sash not only signify his accomplishments, but illustrate how far he has come.
Andrew’s journey of overcoming a difficult illness that left him in and out of the hospital during most of his early childhood years, led him to recently receiving the highest achievement in Scouting, attained by only about 2% of all scouts.
“Becoming an Eagle Scout has allowed me to reflect on how much I’ve gone through to get to this point,” Andrew said. “I’m grateful for all of the support I’ve received from various people over the years.”
Among Andrew’s friends and family that were present as he received his Eagle Scout medal during a special ceremony in April, were two guests who witnessed firsthand the transformation Andrew made from being a sick and fragile boy to the confident young man that stood before them.
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Sonny D’Ambrosio, age 7, here with his parents, was diagnosed with an autoimmune condition called IPEX as an infant.
Earlier this year, Nicole D’Ambrosio found herself in front of a room full of scientists that were gathered in part to discuss their progress on a novel cell therapy that has the potential to one day save her son’s life.
She had been asked to present her family’s story as part of a company-wide meeting at Casebia Therapeutics in Boston. As she began, she recounted how her only child, 7-year-old Sonny, has reached the brink of death more times than she can remember because of the rare autoimmune disorder he was diagnosed with as an infant. How the bone marrow transplant he received was the only thing that could save him, but caused endless complications, including skin necrosis and epilepsy.
How the thought of going through another transplant when the initial transplant failed compelled her and her husband to pack up their home and move 3,000 miles west to seek other options. How she lies awake at night praying that Sonny’s body can stay strong enough until a safer treatment comes along. How, despite everything he’s been through, Sonny is still a happy little boy with a wicked sense of humor. Read full post »
Today, U.S. News & World Report named Seattle Children’s to its Honor Roll of the 10 best children’s hospitals in the nation.
The annual survey ranks hospitals on outcomes and quality-related information, including success in managing patients, commitment to best practices, nurse staffing ratios, safety, and availability of specialty care. Rankings also factor in each specialty’s reputation, as assessed by specialists at other institutions around the country.
For 2019, Seattle Children’s is ranked #10 out of nearly 200 pediatric hospitals that were evaluated. U.S. News & World Report ranks pediatric hospitals in 10 specialty areas. In every one, Seattle Children’s ranked in the top 20, and several ranked in the top 10:
- Nephrology: #8
- Diabetes and Endocrinology: #10
- Neurology and Neurosurgery: #10
- Cancer: #11
- Pulmonary: #12
- Neonatology: #14
- Urology: #15
- Cardiology and Heart Surgery: #16
- Orthopedics: #17
- Gastroenterology and GI Surgery: #18
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Jay Jones, wife Kara, and their daughter Hunter Rose enjoying time at home in 2018 in between chemo treatments.
Dads are expected to instinctively be strong like a bull, right? That means stepping up to the plate and handling any situation that arises with ease. However, it is much more difficult to keep up this facade in times of tremendous stress, like learning your daughter has a life-threatening disease. The problem for me was that it was impossible to live up to the kind of “strong” I was telling myself I needed to be.
Up until my daughter’s stage four high-risk neuroblastoma diagnosis in 2017, I believed in the stereotypical definition of strong. Yet at the end of that first day, I realized my definition of strong was off a bit.
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At 3 years old, Yori Tsunoda was a bright and energetic boy who was always on the go.
“Yori had a huge personality,” his mother, Chezik Tsunoda, said. “As the third of four boys, he knew how to stand out. He was really silly, always made everyone laugh and loved playing with his brothers.”
The toddler had a knack for puzzles and a vast knowledge of airplanes. One of Yori’s favorite books was an airplane encyclopedia and he could name any plane by the picture.
Less than a year ago, Yori was at a friend’s house playing in the pool when he quietly slipped below the surface. When Yori was pulled from the water, it was clear that he was not breathing and did not have a pulse. After a few minutes of CPR, first responders arrived. They were able to revive his heart and transfer him to Seattle Children’s.
While Yori’s body eventually recovered, his brain never regained function due to a severe lack of oxygen, which is unfortunately the case with many drowning victims. Two weeks later, he was pronounced brain dead and passed away on Sept. 1, 2018.
“I had no idea when we walked into the hospital that we would not be walking out with him,” Tsunoda said. “As a parent, you assume it’s going to be okay, but it wasn’t. We were completely devastated.” Read full post »
Arabella Smygov, 7 months, of Lynnwood, Washington was one of the first babies in the state to receive the gene therapy, Zolgensma. The U.S. Food and Drug Administration approved Zolgensma for the treatment of Spinal Muscular Atrophy in children less than 2 years of age this month.
When Arabella Smygov was diagnosed with spinal muscular atrophy (SMA) type 1 at 3 months old, the first recommendation Dr. Fawn Leigh, a neurologist at Seattle Children’s, gave her parents, Sarah and Vitaliy, was to wait on searching for information about SMA online.
This is because up until a few years ago, SMA type 1 was a fatal diagnosis. Most of the information available online painted a bleak picture. Babies diagnosed with SMA type 1, the most severe and common form of the neurodegenerative disease, usually don’t survive beyond age 2 and if they do, they require full support for breathing from a ventilator.
Leigh had good reason for wanting her parents to have hope for Arabella’s future. Two treatments, including the first-ever drug approved for the condition by the U.S. Food and Drug Administration (FDA) in 2016 called Spinraza, and Zolgensma, a gene therapy approved by the drug agency this month, are rapidly changing the trajectory for children with Arabella’s condition.
“I always remember back to when I had to offer my first SMA diagnosis,” Leigh said. “I was heartbroken to tell this young couple that we didn’t have anything for their baby. Now, we’re planning a future for these babies because we have not one, but two good treatment options.” Read full post »
Makenzie Childs, 6, has returned to doing what she loves most – competitive dance – following a stroke in October 2017.
The lopsided smile on Makenzie’s face said it all. She had just thrown up, and her dad, Shawn Childs, was helping her get cleaned up in the bathtub.
“My husband yelled for me to come into the bathroom and then asked Makenzie to smile,” Jamie Childs, Makenzie’s mom, said. “The smile was devastating. It was only the right half of her face. I knew something wasn’t right.” Read full post »
Today, nearly one in five children has a mental, emotional, or behavioral disorder. While some seek relief from their distress using positive coping methods, others may choose methods that are harmful and potentially life-threatening.
Dr. Yolanda Evans, an adolescent medicine specialist at Seattle Children’s, has been seeing a recent increase in teens coming into the clinic with self-injuries done through cutting, burning, pinching and scratching, among others.
“It’s possible that the increase may be partly due to the impact that social media and technology has on the current generation,” Evans said. “Kids might see their peers online engaging in self-harming behavior as a way to cope with their emotions, influencing them to replicate that type of behavior.”
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Photo credit: Kelsey Adrienne Photography.
Janessa Felt watched helplessly as her 2-year-old daughter’s sunny disposition began to fade away. Charlotte’s bright smile and infectious laugh usually hid her struggle well, but that façade was cracking. Charlotte was getting sicker, which was evident by her yellow skin, the silver highlights in her hair and her large distended belly. Her piercing blue eyes were sadder than usual. She laid cradled and uncomfortable in her mother’s arms as fluid built up in her abdomen. Her liver was failing her.
Charlotte was admitted to Seattle Children’s a week earlier. Hospital stays weren’t abnormal for them, but this time was different.
“It is hard to watch your baby be so sick, hooked up to so many machines, and not be able to do anything,” Janessa said. “As a mother, you want to be able to take that pain away.”
Janessa didn’t know how much longer Charlotte would be able to wait for a miracle. She had been on the waitlist for a new liver for year already.
“It wasn’t scary until recently,” Janessa said. “Now, it’s clear she needs a new liver. We just want her to start feeling better. It’s heartbreaking to watch her go through this.” Read full post »