2019 Summer Scamper Patient Heroes
When you fundraise or donate through Summer Scamper, you bring care, comfort, and cures to children and families like our brave Patient Heroes. Check back often for more updates.
“If there was one word that could be used to describe Ariana, it would be compassionate,” says her mom, Jeannine. “She genuinely cared about people, whether it was friends, family, teammates, or random acquaintances at school. Ariana was the type of individual who’d spend her free time helping others. Her teachers at school would typically see Ariana helping struggling students with their schoolwork, during her lunch and recess breaks.”
Nine-year-old Ariana was also passionate about music, and enjoyed an eclectic playlist of country, classic and alternative rock, pop, rap, and Spanish-language songs, which she’d sing along to with her dad, Rodolfo.
“By the time she was 8, she had been to three concerts,” Jeannine remembers. Ariana’s favorite band? Maroon 5.
Just one day before Ariana’s 9th birthday, Jeannine and her husband got the news: their smart, calm, sweet daughter had leukemia. They decided to let Ariana enjoy her day before they shared the news and the plan for treatment at Packard Children’s.
“She had a moment, but she didn’t let the news break her down,” Jeannine says. “She still wanted to do things and be active.”
During Ariana’s inpatient stay at the Bass Center for Childhood Cancer and Blood Diseases, she could be found upstairs doing art and reading at the Hospital School. She would Facetime with friends who couldn’t come and visit and would walk around the hospital, exploring. Ariana decided to embrace life, regardless of her circumstances.
Treatment had just started—Ariana received chemotherapy and was able to return home and receive care as an outpatient at the Bass Center—when she woke up one morning with a terrible fever. Ariana’s condition deteriorated, and she was admitted to our pediatric intensive care unit (PICU). Just four days later, Ariana went into cardiac arrest and passed away. Her family and care team were devastated.
Social workers and our Family Guidance and Bereavement Program were there for Ariana’s family. They provided the family with a box of mementos and connected them with grief counselors.
“We will be forever grateful to the care team at the Bass Center and in the PICU,” Jeannine says. “And our social worker, Shionda, was there and able to guide us through when we didn’t know what to do or what to ask.”
Every year, Summer Scamper serves as an opportunity for the Family Guidance and Bereavement Program to fundraise in honor of families like Ariana’s. We’re deeply grateful for everyone who Scampers.
Claire, 7, San Luis Obispo
“I just got a call. Claire has . . . cancer,” Claire’s mom, Lindsey, whispered into the camera as she shared the news with friends and family.
Sweet and outgoing Claire was just 6 years old when she was diagnosed with a rare type of non-Hodgkin lymphoma and her family made the first of many trips from their home in San Luis Obispo to Lucile Packard Children’s Hospital Stanford.
“One day she was in school, and the next day she wasn’t,” remembers Lindsey. Claire didn’t even get to say goodbye to her kindergarten classmates.
Claire’s medical team developed a specialized plan of treatment. She underwent six rounds of chemotherapy and received blood transfusions when her white blood cell count was dangerously low. First, she lost her eyelashes and eyebrows, and then Lindsey decided it was time to shave Claire’s head.
Through it all, Claire and her family kept an inspiring and positive attitude. Her care team credits that outlook with helping Claire battle through nausea, mouth sores, swelling, and other side effects.
Drew was just 8 hours old when he started turning blue. His care team leapt into action to determine why. Drew’s parents were shocked to learn that he had a congenital heart defect called pulmonary atresia with intact ventricular septum. The valve that controls blood flow from Drew’s heart to his lungs hadn’t formed properly.
“Our lives changed forever,” recalls Drew’s mom, Vivian.
Three days later, Drew had his first open-heart surgery at Packard Children’s. For the last eight years, he has received care from the team at our Betty Irene Moore Children’s Heart Center. On the horizon is Drew’s “big surgery” to fix his pulmonary valve.
In the meantime, Drew is a proud big brother and an active and athletic kid who loves to play basketball and golf. He has also grown into an advocate for other children with heart defects.
“Drew enjoys sharing his story with his classmates and friends. Every year we help educate his school about Congenital Heart Awareness Week and talk about our experiences being a heart family,” Vivian says.
Keegan, 11, San Jose
Eleven-year-old Keegan loves to paint and make her friends and family laugh. She is a happy kid, and you’d never know that she once faced life-threatening food allergies.
Keegan was 18 months old when she had her first serious allergic reaction. Classmates had shared peanut butter crackers with her, and afterward, Keegan told her mom something was “spicy” in her mouth. Then the vomiting started. Testing soon revealed that her peanut allergy sensitivity was through the roof!
“Our lives changed overnight,” says Jeannie. “Eating at restaurants, grocery shopping, birthday parties, and potlucks would never be the same again.”
Thankfully, the Sean N. Parker Center for Allergy and Asthma Research at Stanford University is an international leader in clinical trials that help children and adults overcome allergies that once overshadowed their lives.
In 2016, Keegan started her first clinical trial, where she received a placebo for a year. In a subsequent trial, she received actual peanut protein, with a start dose of 3 mg and a final goal of 300 mg (1 peanut).
“It was a rough start,” remembers Jeannie. “We were told Keegan was one of the most sensitive patients they’ve had in the program. There were times when we felt utterly defeated, but Keegan and the caring staff at Stanford never gave up.”
Do you hear that? That’s the sound of thousands of people cheering on Kruz and Paizlee all the way from Alabama. They have quite the fan club back home, and it’s not hard to see how they’ve inspired so many strangers to come together for a common cause.
The siblings are two of just five children in the United States who have Schimke immune-osseous dysplasia (SIOD), a multisystem disorder that is inherited in an autosomal recessive pattern. SIOD impacts the body in many ways, including kidney failure, a weak immune system, and hip dysplasia.
“There was a 1 in 80 million chance both Kruz and Paizlee would have SIOD,” says their mother, Jessica. She and her husband, Kyle, have moved their family temporarily from Muscle Shoals to Palo Alto so their children have access to the best care and a chance for a brighter future. They have built close relationships with researchers at Packard Children’s and work tirelessly to raise funds for SIOD research.
“We strive every day to not only give Kruz and Paizlee a promising life, but to give the other children all over the world a chance as well,” says Jessica. “Continued funding is paramount for such an extremely rare condition. Your support saves precious lives.”
Lars, 11, Mountain View
11-year-old Lars is quite the ham once he gets a microphone in his hands, so keep an eye out for him on the Summer Scamper Family Festival stage this year. He’s a smart, kind young man who loves playing Sumdog (an adaptive learning math game), making lists, and playing with Lego men.
He also has a really strong affinity for his doctor, Kirsten Willar, PhD, clinical instructor of psychiatry and behavioral sciences (child and adolescent psychiatry) at Stanford University School of Medicine and the Stanford Autism Center.
“Dr. Willar is Lars’ favorite care provider, hands down, no competition. Dr. Willar is the winner!” says Lars’ mom, Sarah. “Everything about Dr. Willar: her demeanor, her voice, her honest disposition, her creativity, and the controlled and supportive clinical environment she has created for her patients makes it possible to effectively tackle hard issues. Her success is demonstrated in Lars’ ability to walk out of a session with his shoulders straight and his head held high because he has been led to understand that he CAN do hard things and be okay afterward.”
The Stanford Autism Center at Lucile Packard Children's Hospital Stanford is dedicated to providing specialized clinical services and advancing research in Autism Spectrum Disorder. Thanks to donors like you, the team provides Lars and many other children with the care they need, while also supporting their families with resources and information.
“For children with autism there are many roadblocks to success; some medical, some communication-related, and others that apply to everyday social behaviors such as recognizing and interpreting social cues, understanding facial expressions, difficulty empathizing with others, and the ever-present rigidity of autism. Through the services Lars has received, he is slowly but surely learning to make his way in the world socially, to better understand his peers. And he is being allowed the opportunity to generalize the skills he has learned in therapy to improve his quality of life and sense of self-worth,” says Sarah.
Thanks to his care team at the center, Lars is able to enjoy childhood, designing obstacle courses and programming with Scratch, an online community and resource.
Veranna’s stepmom, Sheila, remembers exactly how she felt during her first visit to Lucile Packard Children’s Hospital Stanford.
She felt relieved. Relieved that there was a team ready to get Veranna the life-changing treatment she desperately needed. Relieved that a social worker was standing by to help their family with the challenges of having one child hospitalized and four others at home 120 miles away. But mostly, she was relieved that she knew she could trust these people with Veranna’s life.
“I am very protective of her with anyone,” Sheila says. “When I met the team at Packard Children’s, I knew I could trust them.”
Veranna had been diagnosed with an autoimmune condition that led to hepatitis, cirrhosis, and eventually, liver failure. Veranna also faced an inflamed pancreas that led to multiple hospitalizations.
A liver transplant was Veranna’s best option. Sheila and her husband, Rondell, began the excruciating wait, hoping that a match would be found quickly.
The call that changed everything came at 10 p.m. one night last October.
Marni and Sammy, Belmont
Just hours into her maternity leave, Marni found herself in the hospital, surrounded by doctors and nurses working hard to combat the effects of pre-eclampsia.
At one point, in the span of an hour, Marni’s liver levels shot up near 600, when they should have been in the 20s and 30s. Marni had developed HELLP Syndrome (which stands for hemolysis—the breakdown of red blood cells, elevated liver enzymes, and low platelets).
She was given magnesium sulfate to prevent seizures, but as a result she had double and even triple vision. Her body swelled. Her nurse changed out ice packs on her body all night long to combat hot flashes. She remembers dozens of people rushing into the room when her nurse called for extra help. She was struck by how everyone worked together to ensure she and her baby, Sammy, were safe.
“The care team was incredibly compassionate and confidence-inspiring. Each step of the way, I heard confidence and a plan plus backup options,” Marni says. “Most importantly, information was passed seamlessly through to the many people caring for me.”
Marni and her husband, Adam, had previously lost their first son, Brendan, 20 weeks into the pregnancy. It was a devastating loss, but one that brought them to Yasser El-Sayed, MD, our hospital’s Obstetrician-in-Chief and the Charles B. and Ann L. Johnson Professor at Stanford University School of Medicine.
“We met Dr. El-Sayed the day before we lost our first son,” Marni says. “Through his incredible compassion, expert knowledge, honesty, and ability to provide data or answers to every question we could imagine, we knew we had been blessed to find the most incredible doctor on the planet. We all agreed that when we were emotionally and physically ready, we would embark on a journey together to make our dreams of a living child a reality.”
Marni met with her obstetrics care team up to five times per week during her pregnancy with Sammy. They monitored her vitals meticulously and Dr. El-Sayed performed a procedure called a cervical cerclage—or cervical stitch—to try to prevent premature delivery. Because the team was tracking Marni so closely, they knew immediately when it was time for Sammy’s arrival.