On the Pulse

Benjamin (Ben) Bronske recently said goodbye to the legion of Stormtroopers who have been with him since his first small steps. For many parents, a child’s growth is charted by a simple mark etched on a door frame. For Ben, his growth will be commemorated by a different kind of memento, one of resin and carbon fiber.

Ben recently outgrew his first prosthesis and welcomed a new gaggle of fictional Star Wars characters to walk by his side – porgs. Saying farewell to Ben’s first prosthesis wasn’t easy for Sarah Bronske, Ben’s mother. It signified a major milestone. Read full post »

Shanahan “Shanny” Dameral, 19, recently participated in a clinical trial at Seattle Children’s investigating a new drug for children with treatment-resistant epilepsy.

For the first time in his life, Shanahan “Shanny” Dameral, 19, has a girlfriend. Soon, he’ll be graduating with a high school diploma and looking for his first job on the Kitsap Peninsula.

What seems routine for many is a big deal for Shanahan and other children living with treatment-resistant or intractable epilepsy. For reasons largely unknown, seizures in this subset of children persist long past their discovery in early childhood despite being treated with multiple medications and undergoing surgery to remove the affected parts of their brain.

Diagnosed with epilepsy at age 5, life for Shanahan has always come with seizures attached. When his seizures returned after a second brain surgery shortly after his 16th birthday, his mom Linley Allen, hoped for a medical breakthrough.

“We needed to find something else since another surgery was out of the question,” Allen said. “We had heard about a drug being studied for a more severe seizure condition. I kept holding onto hope that it might be expanded to treat Shanny’s type of seizures because it was all we had at the time.”

Then last year, Shanahan’s longtime neurologist at Seattle Children’s, Dr. Russell Saneto, told the family about a phase 1 trial of an experimental therapy known as Nab-rapamycin (ABI-009) for patients with intractable epilepsy at Seattle Children’s.

“Dr. Saneto has always pushed for better ways to treat Shanny’s seizures, and even after he explained that this trial was early in the research process, Shanny popped right up and asked, ‘When do we start?’” said Allen. “I was like, ‘Shanny, this is going to be a couple of years out,’ so we were both surprised when Dr. Saneto said, ‘No, you can start next month.’” Read full post »

Malia Juarez and her husband were over the moon with excitement when they found out they were pregnant. Their journey to get there hadn’t been an easy one. Juarez suffered from endometriosis, and so heartbreaking words like infertility had been discussed.

They dreamed of the pitter patter of little feet running through their home, and of holding small hands as they embarked on adventures.

They dreamed of that future, until one day, their dream came true.

“She’s a miracle,” said Juarez. Read full post »

Ruth, 3, was diagnosed with a rare gastrointestinal disorder. Despite having a blind mother and partially sighted father, Ruth’s parents proved it was possible to learn the complicated skills that were required to manage her health at home.

For many parents, caring for a child with a serious medical condition can have its challenges.

For Hailee and Ray Hughes, the challenge of caring for their 3-year-old daughter, Ruth, who has a rare gastrointestinal disorder, meant learning complicated skills like how to maintain Ruth’s nutritional needs intravenously through a tube connected to her chest.

“It definitely wasn’t easy at first,” said Hughes. “There was a lot to learn and we wanted to safely care for our daughter in the best way we could.”

Learning the proper techniques involved in Ruth’s care was one thing, but doing it with partial to no vision was another.

Read full post »

Radhika Poppy Ennis is an energetic 4-year-old who loves to laugh, play and dance. But until recently, she was unable to stand or walk on her own.

When Leslie and Jeremy Ennis adopted Radhika from India last year, she had extensive burns on her lower body. She could not straighten or use her left knee and moved around with her arms, dragging her left leg. The family was referred to Dr. Vincent Mosca, an orthopedic surgeon and chief of foot and limb deformities within the Orthopedics and Sports Medicine department at Seattle Children’s. The only option was to amputate Radhika’s lower leg, so that she could get a prosthesis.

In the past year, Radhika has not only learned a new language and way of life. She also underwent surgery and received a shiny blue prosthetic leg.

“Radhika is really determined and resilient,” said Leslie. “She has been through a lot, but from the very beginning she’s been really happy and up for adventure. We were excited for her to be able to run, dance, play with other kids and just to be off the floor and be seen. She loves people and wants to be in the mix so badly.” Read full post »

Danica Taylor, 3, has undergone treatment at Seattle Children’s for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT.

Recalling the treatments her daughter has had over the past year for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT, Audrey Taylor says it’s like watching a game where your favorite sports team keeps losing and then regaining the lead.

“There are so many times when you feel like you totally got this, followed by moments where you’re not really sure what’s going to happen next,” she said.

Diagnosed with ATRT at 21 months old, Danica Taylor, now 3, has endured multiple rounds of chemotherapy, stem cell transplants, two brain surgeries, laser ablation and proton beam radiation therapy to try to stop the fast-growing tumor.

Danica remained strong through it all.

“She’s just the bravest and toughest kid I know,” Taylor said. “Whenever I have to do something hard, I summon my inner Danica.” Read full post »

Amani Jackson and her identical twin sister, Amira, possess a rare bond that began in their mother’s womb.

Up until the moment they were born, grasping on to one another, their bond remained unbroken.

It wasn’t until surgeons noticed one of them wasn’t quite like the other, that they needed to part ways.

“Although they were both premature, Amira came out healthy as can be,” said their mother, Stranje Pittman. “However, as soon as the doctor saw Amani, they knew something was wrong. Before I knew it, she was rushed out of the operating room and immediately taken to Seattle Children’s.”

Read full post »

A year ago, baby Titus Sickles was fighting for his life. In need of a new heart, doctors didn’t know if he was going to make it to transplant. Patiently and desperately, the family waited on the transplant list, watching as their newborn baby’s heart failed before their eyes.

“I knew he wasn’t doing good,” said Rena Sickles, Titus’ mother. “I totally lost it emotionally and said, ‘He’s sick of fighting and I can’t make him do it anymore. So, when he’s ready to go, we’ve just got to let him.’ That’s a really hard thing to to be okay with.”

Today, Sickles said you would never know by looking at Titus what he’s been through. He’s is a happy, healthy 1-year-old thanks to a gift Rena says she can never repay – a new heart.

“There are no words to express how grateful we are,” said Sickles. “It’s a miracle he’s here today. We make the most of every moment we have with him because we know they’re not promised.” Read full post »

In honor of National Kawasaki Disease Awareness Day on January 26, we are sharing the story of Olivia, a 9-year-old who lives with the disease. Research at Seattle Children’s aims to improve life for children with this condition who are at risk for aneurysms.

When Olivia Nelson was 3 years old, her parents noticed that she had a fever that wouldn’t get better. They brought her to a nearby hospital, where she spent about two weeks being screened for diseases. As doctors tried to find a diagnosis, a lymph node on Olivia’s neck became swollen. Alarmed and wanting an answer, the Nelsons asked to transfer to Seattle Children’s.

“It was very frustrating,” said Olivia’s father, Trevor Nelson. “She was in the hospital for two weeks in and out, and they still couldn’t figure out what was happening.”

Soon after the family arrived at the hospital, Olivia was diagnosed with Kawasaki disease, a serious inflammatory condition affecting the eyes, lips, hands and coronary arteries. The disease affects about 7,000 children in the U.S. each year. Though the family was relieved to have a correct diagnosis, they learned Olivia had developed coronary aneurysms, the enlargement of her coronary arteries due to the persistent inflammation.

A new study funded by the National Institutes of Health (NIH) could improve the quality of life for children with Kawasaki disease at risk of developing coronary artery aneurysms like Olivia did. Dr. Michael Portman, a cardiologist at Seattle Children’s Heart Center Kawasaki Disease Clinic and researcher at Seattle Children’s Research Institute, hopes to find genetic biomarkers that will predict which patients will not respond to the standard treatment and thus have a higher risk of developing coronary artery problems.

“Olivia will have lifelong issues related to her heart and coronary arteries,” said Portman. “It’s a shame that a 9-year-old has severe heart disease that might have been prevented had we had ways to quickly diagnose and treat her disease effectively.” Read full post »

Seattle Children’s researchers studying how the immune system responds to the early stages of a sepsis infection show how a rare type of immune cell called basophils (represented by dark purple) arrive at the infection site 24 hours after sepsis is induced in the lab.

In a paper published in Nature Immunology, scientists from Seattle Children’s Research Institute reveal how a rare group of white blood cells called basophils play an important role in the immune response to a bacterial infection, preventing the development of sepsis. Researchers say their findings could lead to better ways to prevent the dangerous immune response that strikes more than 30 million people worldwide every year.

“Sepsis is the number one killer of children globally, yet little is known about what goes wrong in an individual’s immune system to cause sepsis as it fights off an infection,” said Dr. Adrian Piliponsky, a principal investigator in the research institute’s Center for Immunity and Immunotherapies. “Without this information, it’s hard to predict who will develop sepsis or explain why sepsis causes a range of immune responses in different individuals.” Read full post »