Summer Scamper Patient Heroes
Each year, our Summer Scamper Patient Heroes inspire our race participants and volunteers by sharing their stories of hope. We are so grateful to our past Patient Heroes and welcome them into our Summer Scamper Patient Hero Alumni Association. They are wonderful examples of the difference your participation in Summer Scamper makes in the lives of our patients and their families.
Meet our 2016 Patient Hero Alumni:
Lili is a natural-born performer. She loves the stage, and her parents and younger brother and sister are always ready to give her a standing ovation. They know that behind the scenes also applauding Lili is a dedicated and collaborative team spanning five departments at Packard Children’s.
For the four years Lili has battled spina bifida occulta, she has never let spinal surgery or nerve damage stop her. Thanks to her incredible care team at Packard Children’s and the support of donors like you, Lili is ready to make her next curtain call.
“They are such happy children who love a good adventure,” says Lee, dad to 7-year-old Austin and 5-year-old Olivia. “They’re also pranksters. Who knew 5-year-olds like to send texts?”
Austin and Olivia have autism, and have participated in studies at Stanford that helped them build language skills through behavioral therapy. “They have responded extremely well to the therapy. We’re so grateful to the Stanford team,” Lee adds.
Thanks to your support of Autism Research, more families like Austin and Olivia’s can have opportunities to embark on adventures and show that there is no limit for children with autism.
After being diagnosed with a rare mitochondrial disease, Trevor received care from Packard Children's specialists in genetics, neurology, and gastroenterology.
In 2010, Trevor spent more than six months in our pediatric intensive care unit as his medical team worked together to understand and control his movement disorder. Sadly, even though Trevor was able to be discharged, he passed away suddenly at home in 2011 due to complications from the disease.
Our Family Guidance and Bereavement Program—which is funded through philanthropy—was there for Trevor’s family, surrounding them with a community of compassionate and understanding individuals and families. Trevor’s dad says, “Our involvement with the Family Guidance and Bereavement Program and the Summer Scamper are ways in which we honor Trevor and simultaneously show our gratitude for the excellent care he received from everyone at Packard Children’s.”
Nick received devastating news on his 13th birthday: He had acute lymphoblastic leukemia. His world came to a screeching halt.
“We were overwhelmed with information,” recalls Jennifer, Nick’s mom. “And then shocked by how quickly his treatment started.” In our Bass Childhood Cancer Center, a team of doctors, nurses, anesthesiologists, and other staff led by Kara Davis, DO, went to work right away to care for Nick. “And special kudos to Jake, Nick’s child life specialist,” adds Nick’s dad, Mike. “He has been so attentive to making Nick’s stay as pleasant as possible and helping Nick power through his treatment.”
By last June, Nick was responding so well to therapy that he participated in his first Summer Scamper. This June, he’ll be Scampering again to honor his fellow cancer patients and to say thank you to those who have supported his run toward the treatment Finish line—which he expects to cross next spring.
"Seeing our baby hooked up to so many machines and monitors was devastating—and awe-inspiring,” mom Kira recalls of Hayden’s open-heart surgery at just 9 months old. Hayden was born with heart defects that threatened his life.
Luckily, our Children’s Heart Center, supported by generous donors like you, is home to world-renown cardiothoracic surgeons, including Frank Hanley, MD, who perform 600 life-saving surgeries each year.
Hayden recovered in our cardiovascular intensive care unit, and Kira says, “The nurses he had while in that single room, monitoring his every heartbeat for those first hours post-surgery, were amazing. We are so grateful for their attention and the guidance they provided as they showed us how we could just do the simple things like feeding him a bottle of breastmilk."
Just a few years ago, Ari and Aviv had to wait in the airport terminal while their mom, Sharon, stepped on the plane with the flight crew, alcohol wipes in hand. She was on a mission: to wipe down every surface that might contain traces of nuts and protect her boys from a potential life-threatening allergic reaction at 30,000 feet.
Thanks to donors like you who support life-changing work at our Sean N. Parker Center for Allergy and Asthma Research, Ari and Aviv were able to participate in Phase 1 oral immunotherapy trials.
Today the brothers are free from their allergies. And free to go to the library, get on planes without worry, and this summer, free to take their first big trip without their parents to visit family abroad.
Kai’s parents describe him as their “big rugby fighter,” after the rugby players they watched while living in Ireland. And they’re right—Kai is definitely a fighter. Born four weeks early through an emergency cesarean section at Packard Children’s, Kai was only a few minutes old when he stopped breathing. What doctors first suspected were underdeveloped lungs due to prematurity, evolved into an infection that left Kai in very critical condition in the NICU.
Kai’s dedicated team of nurses talked the family through their most painful moments. “They were ever so gentle,” recalls Imma, Kai’s mom. “And of course, we will always be thankful to the doctors who never gave up, including Drs. Kumar, Palma, and Stevenson.”
By supporting neonatology research at our hospital, you can help our tiniest patients like Kai win battles against huge odds.
For many years, cystic fibrosis made it difficult for Maria to breathe, fight off infections, or absorb nutrients in her food. Normal childhood experiences like going to school were out of the question.
Through it all, Maria and her family relied on the unfailing care of our hospital and her doctor, Carol Conrad, MD.
On November 7, 2012, Maria received an amazing gift: a double-lung transplant. She told us she was deeply thankful for the support of hospital supporters like you and for Dr. Conrad, who she said was, “there with me through my struggles, through my set-backs, through my endless amounts of hospitalizations, and most importantly, through my successes.”
Sadly, on April 7, 2016, Maria passed away unexpectedly after an illness, surrounded by her family.
“She was wise beyond her years,” says Maria’s mom, Marianela, who has found comfort knowing that Maria was an inspiration to all who met her. “I want to continue to work with other families battling cystic fibrosis and help share some of Maria’s strength with them.”
Being diagnosed with a primary immunodeficiency (PI) can feel isolating and scary, especially for children. Jordan and Alex, brothers who both have Common Variable Immunodeficiency that requires monthly infusions to boost their immune systems, have dedicated themselves to helping those around them, especially children with scary diagnoses.
“Every day I hope they will find a cure for PI so kids like me can stop having to miss out on activities like sports, hanging out with friends and school,” Alex wrote to his friends and family about why he Scampers. “Because of this I feel even more determined to help my doctors raise money to find a cure!”
The boys not only Scamper to support education and research about primary immunodeficiency, but they have also raised enough money to grant wishes for three children through the Make-A-Wish organization. “It is so fun to see them give back to the community,” said mom, Tracy. “The work they do to make sure others have the same opportunities they do is inspiring.”
Luca arrived at our hospital on an emergency flight from the Sacramento area. At just 18 months old, he was in acute liver failure, and his life depended on a transplant. Fortunately for Luca, a match was found and he received a new liver at our hospital just five days later.
For this life-saving care, Luca’s mom, Katie, thanks Dr. Cornfield “who was with us through it all”, and donors like you “for making a miracle happen.” Because of donor support of our Transplant Center, Luca is thriving today and will be running in his first Summer Scamper kids’ fun run this year.
Patria Eustaquio, RN, Patient Care Manager for the Children’s Heart Center’s step-down unit, 3 West/PCU 374, knows exactly what parents are feeling as their child recovers from heart surgery. She once sat there 17 years ago, with her 7-month-old daughter, Marissa.
“I have experienced both sides—as a patient’s parent, and as an employee,” Patria says. “Being diagnosed with life-threatening illness takes a toll on families and the feeling of hopelessness and helplessness is very overwhelming. I often tell my story when talking to parents who feel no one understands their situation.”
Patria is a proud Scamper-er, participating “to help find cures for all the different illnesses that our children suffer from,” she says. “Even a little amount can go a long way to help.”
Read more inspiring stories about our Patient Hero Alumni.