On the Pulse

‘Like Looking at a Miracle’: Baby Blossoms Thanks to Gene Therapy

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 Dances Again After Pediatric Stroke

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 »


Cutting to Cope: What is Nonsuicidal Self-Injury?

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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Charlotte’s Journey to Transplant

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 »


Care Close to Home Gives Carson Ability to Pursue Her Creativity

Carson Bryant, an 11-year-old from Gig Harbor, Washington, was diagnosed with Crohn’s disease. Through the Inflammatory Bowel Disease Center at Seattle Children’s South Clinic in Federal Way, Carson is able to receive the treatment she needs much closer to home.

Creativity is at the center of 11-year-old Carson Bryant’s life.

“I would describe her as being imaginative,” her mother, Andrea Bryant, said. “She has a love for theater and dreams of being an illustrator someday.”

In January 2018, Carson had to put her creative passions aside when she began experiencing symptoms that sparked concern for her mother.

“I noticed Carson was making frequent trips to the bathroom,” she said. “I became even more worried when there was blood in her stool.”

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Mother of Micro Preemie Twins Shares NICU Advice

At 10 months old, Amelia and Calvin Phillips have proven they are fighters, overcoming multiple obstacles to get to where they are today. The twins were born as micro preemies, a term used for babies born before 26 weeks gestation, or who weigh less than 1 pound, 12 ounces.

Throughout their time in Seattle Children’s Neonatal Intensive Care Unit (NICU), their parents, Amanda Littleman and Nathan Phillips, have been by their side. In time for Mother’s Day, Littleman shares her story and advice to mothers in a similar situation.

“Everyone tells you that the NICU will be a rollercoaster ride, and it really is. But it does get better,” Littleman said. “Just seeing Calvin and Amelia today makes all the ups and downs and scary conversations worth it. I can’t believe how far they have come since the day they were born.” Read full post »


Madeline Pursues New Dream After Overcoming Cancer Four Times

Madeline Boese, with her mom Terri, cancer-free after a 12-year battle with acute lymphoblastic leukemia.

When Madeline Boese was 14, she had visions of pointe shoes, tutus and sugar plums dancing in her head. She dreamed of becoming a professional ballerina, and hoped for a future in the spotlight doing what she loved.

Unfortunately, her body had different plans.

One day in ballet class in December 2006, she noticed an odd golf ball-sized lump on her left thigh below her pink tights. Her mom, Terri Boese, said a trip to their doctor in their hometown of Plano, Texas, led to a bone-chilling discovery.

“I was terrified when I heard ‘malignancy detected,’” Boese said. “It was awful and so out of the blue. I felt like I was going to hyperventilate, and it took all I had to hold myself together.”

Madeline was immediately referred to a hospital in Dallas where she was diagnosed with acute lymphoblastic leukemia (ALL). From there, Boese said everything moved rapidly as Madeline began what would be two and a half years of grueling chemotherapy treatment.

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Researchers Ready B Cells for Novel Cell Therapy

Dr. Richard James is leading research to edit human B plasma cells to act as cell factories capable of delivering sustained, high doses of a therapeutic protein.

Scientists at Seattle Children’s Research Institute are paving the way to use gene-edited B cells – a type of white blood cell in the immune system – to treat a wide range of potential diseases that affect children, including hemophilia and other protein deficiency disorders, autoimmune diseases, and infectious diseases. If successful, their research would open the door to offering this experimental cell therapy as the first-of-its-kind in clinical trials at Seattle Children’s in as soon as five years. Read full post »


Avery’s Miracle Showed up Wearing Cowboy Boots

On July 10, 2018, Avery Crawford entered the world – a beautiful and seemingly perfect baby girl. Little did anyone know about the battle that was secretly raging in her tiny body as her heart struggled to do its job.

Avery was a miracle to her parents, Elaine and Jordan Crawford. Their 7-year-old son, Quincy, had always wanted a little brother or sister, but doctors said it wasn’t possible. Years went by and they began to lose hope. Then one day, out of the blue, their dream came true. Elaine was pregnant.

“She was a gift,” said Elaine. Read full post »


Alaska Teen is Climbing to New Heights After Heart Transplant

Just two days before he got sick, Adrian Peterson was practicing martial arts – a typical activity for the active 17-year-old who regularly biked, climbed and hiked. But that all changed in October 2018, when Adrian woke up feeling congested and nauseous.

“That was the only forewarning I got for what was to come,” Adrian said.

At first, doctors in Fairbanks diagnosed Adrian with the flu. However, about two weeks later, doctors at an urgent care center discovered Adrian had something more. He was sent to an emergency room with acute heart failure.

“My next memory was waking up while being toted over to an ambulance. I was told that we had to fly to Seattle Children’s,” Adrian said. “I fell asleep on the flight, and the next thing I knew I was in Seattle with an IV line in my neck.”

Adrian was diagnosed with dilated cardiomyopathy, which is when the heart is severely weakened and it becomes enlarged.

“It was completely unexpected,” Adrian said. “All I knew was that I wanted to be healthy again.” Read full post »