Patient Stories

All Articles in the Category ‘Patient Stories’

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 »

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 »

New Drug Trial Gives Hope for Treatment-Resistant Epilepsy

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 »

One Family’s Message to Others, ‘Everyone is Unique’

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 »

Visually Impaired Parents Prove There Are No Limits to Care

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 »

With New Leg, Radhika Walks For First Time

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 »

Lighting the Way for Children With Brain Tumors

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 »