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.
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.”
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.