Patient Stories

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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 »

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.

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 »

A Mother’s Mission to Advocate for Organ Donation

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. Today, 2-year-old Hudson is thriving.

Hudson Hill was born with biliary atresia, a liver condition that affects a baby’s bile ducts. At only 2 months old, Jordan Hill’s beautiful blue-eyed baby with long brown locks was in dire need of a new liver. His only hope was a donor. Below, Jordan explains the hopelessness she felt after her son was diagnosed and why she now advocates for organ donation.

At 6 weeks old, my son, Hudson, was diagnosed with a rare liver disease. As parents, you do everything in your power to protect your children. Despite our efforts and optimism, we couldn’t protect Hudson from his failing liver. We faced a truth that no parent should: without a new liver, our son wasn’t going to survive and there was nothing we could do about it. At 12 weeks old, Hudson was officially placed on the national organ waiting list. As I reflect on how I felt that first year, I always come back to the same word: helpless. Read full post »

Sewing a Seamless Transition for Chester’s Autism Care

When Chester Dudley was 3 years old, his mother, Stella Ogiale, enrolled him into a child care center located near their home in Philadelphia, Pennsylvania.

After a few months, Ogiale received a startling message from the center telling her that there might be something wrong with Chester.

“They told me I needed to get him checked,” Ogiale said. “When I heard that, I became so emotional and upset that I stopped taking him there.”

She thought her son’s hyperactive behavior was like any other child’s, but to give her peace of mind, she decided to have him evaluated.

“Chester underwent testing and I was told he had a mild intellectual disability, but nothing else,” Ogiale said.

Two years later, the family moved to Seattle. Ogiale noticed Chester’s behavior was worsening and decided it was best he be evaluated again.

“He was 5 years old and at the age where he would be starting school, so I was worried,” she said. “That’s when I decided to take him to Seattle Children’s for help.”

Navigating a new landscape

Chester was diagnosed with autism spectrum disorder (ASD) and began receiving treatment at Seattle Children’s Autism Center.

“I think at first I was in denial that he had autism,” Ogiale said. “I felt guilty and didn’t want to believe it.”

Chester had a limited ability to communicate and exhibited aggressive behavior.

“He would throw things, and hit and push people,” Ogiale said. “You could tell that he did it out of fear.”

Over the next several years, Ogiale did her best to normalize Chester’s life as best as possible by continuing his schooling and enrolling him into special needs programs.

“I worked with the school district to provide him with support,” Ogiale said. “There were many people, such as teachers and therapists, that helped him function in his daily life.”

However, when Chester reached his late teens, Ogiale had growing concern about the resources that would be available for her son once he completed school and entered adulthood.

Through the Autism Center, Chester began seeing Dr. Gary Stobbe, program director of adult autism transitional services, who helped to Ogiale navigate Chester’s care when he turned 19.

“When I met with Chester for the first time, his mother and I discussed the strategies she was using to manage Chester’s behavior,” Stobbe said. “We realized that the strategies that worked for him when he was younger did not work for him as an adult.”

With Stobbe’s help, Ogiale began to have a better understanding of Chester’s desires in life, even though he couldn’t communicate them in a conventional way.

“Although he’s minimally verbal and presents prominent autism behaviors, I could tell that Chester wanted was to be treated like an adult, just like anyone else his age,” said Stobbe.

During that first encounter with Stobbe, Ogiale was caught in disbelief when she saw Chester do something that he hadn’t done before.

“While Dr. Stobbe was asking Chester some questions,” Ogiale said, “Chester laughed.”

This was a pleasant surprise to Ogiale, as she thought Chester’s ability to communicate was extremely limited.

“That opened the gate for me to better recognize the way Chester communicates,” Ogiale said. “Within a matter of minutes, Dr. Stobbe got Chester to feel comfortable and start talking to him.”

New doors to opportunity

As Stobbe continued to work with Chester into his adulthood, seamlessly transferring his care from the Autism Center to the University of Washington Adult Autism Clinic, he saw positive changes in Chester’s behavior.

“Chester began adopting more age-appropriate behaviors,” Stobbe said. “He seemed happier and more confident.”

By the time Chester was about 22 years old, all his siblings had moved away from home, leaving him without the company he was used to having around. Ogiale sensed Chester was lonely and that he needed a place where he could meet new people and have friends.

“There has been a lack in educational, recreational and vocational opportunities once people with ASD and other developmental disabilities turn 21 and age out of school,” Stobbe said. “Often parents or caregivers will feel lost, as the need for these services are still incredibly important.”

Then, Ogiale learned about a new program through Seattle Children’s that provided individuals 18 years and older with developmental disabilities, including autism, classes and activities designed to offer meaningful opportunities for adults to build on strengths, increase confidence and promote independence.

“Someone from Dr. Stobbe’s team presented this to us and asked if we’d be interested,” Ogiale said. “I immediately said, ‘Absolutely!’

The Seattle Children’s Alyssa Burnett Adult Life Center, which opened its doors in July 2014, was founded by Charles and Barbara Burnett, parents of Alyssa, a young woman living with autism spectrum disorder.

They had been working to address the disparity in opportunities for adults like Alyssa, founding the Tessera Center for Lifelong Learning in 2004. A decade later, the Burnetts and Tessera donated $7 million, including Tessera’s space in Bothell, Wash. to launch the Alyssa Burnett Adult Life Center, which offers a variety of 12-week classes, ranging from art to yoga to independent living skills, taught by community members who are experts in the class topics with guidance from Seattle Children’s behavior specialists.

“It was the perfect place for Chester,” Ogiale said. “He was able to get involved in many different activities such as dance and music. Chester has always loved music and for him to be able to participate gives him so much joy and happiness.”

Not only did Chester get to engage in the arts, he also learned other life skills such as cooking and swimming.

“He can now confidently heat up his own food in the microwave,” Ogiale said. “This was a big deal because there was a time when he couldn’t do that. The ability to operate the microwave came from the skills he learned in the cooking class.”

Ogiale says swimming has by far been his favorite activity.

“We live near a lake and before I was never comfortable taking him on a boat ride because he couldn’t swim,” she said. “Now, through the program, he has learned how to swim and does it two days a week. I can tell that it makes him relaxed and feel a sense of worth.”

Building a happy community

With the continuous care Chester receives from Stobbe and the ongoing activities he participates in at the Alyssa Burnett Center, Ogiale couldn’t be more thankful to see her son thrive as an adult.

“He’s now 28 years old and I can say that he’s much happier,” Ogiale said. “I think he feels fulfilled and has a new appreciation for life. It has given him something to look forward to.”

It’s a rewarding feeling for Stobbe when he sees positives changes in patients like Chester.

“It’s extremely gratifying to see Chester continuing to be happy, due in large part to the opportunities that the Alyssa Burnett Center has provided him with,” he said. “It can be heartbreaking to see people who can be helped but don’t have access to the services they need. That’s why places like the Alyssa Burnett Center, that give individuals like Chester a supportive community, are incredibly important.”

Ogiale knows the future isn’t clear for Chester but remains hopeful.

“Previously with the Autism Center, and now at the Alyssa Burnett Center, Seattle Children’s has provided us with a holistic approach to Chester’s care,” Ogiale said. “They have expanded Chester’s scope on life and given him a sense of purpose. I couldn’t ask for anything more.”


Scientists Find Clues to Rare Mutation Hours After Toddler’s Brain Surgery

At 5 months old, Tyler Cassinelli, now 3, was battling both liver cancer and intractable epilepsy. When he was at Seattle Children’s preparing to undergo cancer treatment, Tyler had a seizure that stopped his breathing.

“It was one of the scariest moments of my life,” said Jane Cassinelli, Tyler’s mother. “We could see his stats on the monitor dropping, and doctors came rushing in.”

Doctors quickly intubated and revived Tyler. Five months later, his cancer was in remission. However, he continued to have unpredictable and life-threatening seizures that multiple medications failed to stop.

Genetic testing revealed that Tyler had a mutation of the HCN1 gene. Children with this rare abnormality are at risk for traumatic epilepsies, said Dr. Nino Ramirez, director of the Center for Integrative Brain Research.

“It was difficult to hear that Tyler was expected to have a lifetime of hard-to-control seizures due to a genetic disorder,” said Cassinelli.

In addition to the mutation, Tyler had a brain malformation called focal cortical dysplasia, a common cause of intractable epilepsy. Testing showed Tyler’s seizures were coming from an area on the left side of his brain. Brain surgery to address the problematic lesion could help, and what’s more, his brain could also enable researchers to unlock some of the mysteries of the genetic mutation.

“Tyler’s situation was unique and extremely desperate,” said Ramirez. “There is great clinical interest worldwide in better understanding the HCN1 mutation, and Tyler’s brain could provide a rare window into its role in epilepsy.” Read full post »

Two Heart Transplants and Three Birthdays Later, Mya is Thriving

After undergoing two heart transplants before she was 4 years old, 13-year-old Mya Garcia (above with her brother Marcel) is thriving today.

Mya Garcia, 13, has three birthdays. The first one celebrates the day she came into the world. The other two commemorate the days she was brought back to life.

When she turns 18 years old, her mother, Jamie Gonzalez, has a special gift for her miraculous daughter – a heartfelt letter to honor a day she was worried may never come. It’s a letter she’s been holding onto since her daughter was just 4 years old. She wrote it after Mya received the ultimate gift – a second heart; a third chance at life.

“I wrote her a letter to open when she turns 18 that shares in detail everything she went through after she was born, so she truly knows how hard she had to fight for her life,” Gonzalez said. “I don’t ever want her to take her precious life for granted.”

In 2006, three weeks before Mya was due to be born, an ultrasound revealed she had a serious congenital heart defect and her heart rate was dropping rapidly. Gonzalez was induced, and soon after Mya arrived, she was transferred to Seattle Children’s neonatal intensive care unit (NICU).

“It was awful and traumatic,” Gonzalez said. “I just remember holding her tiny little hand hoping everything would be ok.” Read full post »

Ski Day Gives Kids the Opportunity to Hit the Slopes for the First Time

There was one thing that was brighter than 8-year-old Jana Staudenraus’ coral ski jacket and orange helmet as she flew down the mountain at Stevens Pass this weekend on a sit ski: her big smile. As she came to a stop at the bottom of the slope, her family was there cheering, celebrating the first time Jana had ever skied. The exuberant little girl couldn’t wait to do another run. “I want to go again,” she exclaimed. “I want to go fast.”

Another lap down, with her ski instructor tethered behind her, Jana was beaming with joy.

“Did you see me?” Jana asked her mom.

“Yes. You are doing such a great job,” her mother replied.

“I fell once,” Jana said frowning slightly.

“Yes,” her mother said sympathetically. “But just like in life, what do we do when we fall?” she asked warmly. Read full post »

Benjamin Steps Into the New Year in a New Leg

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 »