Fun run raises money for children’s hospital

“I think everybody kind of knew her as pretty sassy and strong-willed, and definitely willing to put up a fight,” Owen Lu said. Passersby often heard laughter coming from the family’s hospital room, and nurses liked to joke about the side-eyed expression Phoebe gave them. 

Phoebe passed away in March 2022 at the age of 3 1/2 months due to complications from tetralogy of Fallot, a congenital heart defect, and CHARGE syndrome, a genetic disorder. This month, her parents are raising money for pediatric heart disease research at the Summer Scamper, a hospital fundraising event on Sunday, June 25, at Stanford University. Organized by the Lucile Packard Foundation for Children’s Health, the event will include a 5K, a kids’ fun run, and a family festival. The 5K will include run, walk and wheelchair divisions, and the kids’ run is open to children ages 3 to 10. Stanford University student athletes will also be coming to show support. 

This is the Lu family’s second year participating in the Summer Scamper with their team, the Phoebe Jeebies. They will be racing virtually this year with a fundraising goal of $2,500, which will go to the Betty Irene Moore Children’s Heart Center.

“Stanford was the place for us that, like, made all the difference in her life, in our time with her,” Amber Lu said. “It was really nice to be able to have that opportunity that would specifically help the heart center.” 

The Summer Scamper has raised $5 million since it began in 2011. Organizers are hoping to raise $600,000 this year and, as of June 19, they are already two-thirds of the way to their goal, according to summerscamper.org. Registration for the race is $55 for the 5K, $35 for the kids’ fun run, and free for virtual racers. 

The Summer Scamper is the Lucile Packard Foundation’s largest community-based fundraising event of the year, Katherine Powerman, the foundation’s director of community fundraising, said.  Participants can choose which hospital department their donations will go to, and teams can make their own fundraising pages online. 

“I know that there’s a lot of enthusiasm for supporting these hospital programs that do so much for kids right here in our neighborhood and around the world,” Powerman said. “[I’m] really excited to see that energy on Scamper Day.”  

The foundation will be raising money throughout the month of June, using social media to spread the word and incentives like prizes to encourage donations. There is a pair of Taylor Swift tickets up for grabs, which Powerman says has generated excitement among participants. 

“Fundraising is absolutely crucial to our ongoing efforts,” said Dr. Michael Ma, a cardiothoracic surgeon at Stanford Medicine Children’s Health, and one of the leaders of Phoebe’s care team. 

On the Phoebe Jeebies’ fundraising page, the Lu family encourages participants to donate money that can cover coping kits, antibiotics, pain management services, and blood tests. The family benefited from research and treatment methods that were the results of previous funding during their time in the hospital, Owen Lu said.

Phoebe’s health situation was unique, so some of these treatment methods were experimental. When Phoebe went into heart failure, Ma and his team combined two existing treatments into a “hybrid” system to keep her blood flowing.

“Because [the system] worked for Phoebe, and it worked well, it gave us two more months with her,” Amber Lu said. “The team believing in her and being willing to try some things that they hadn’t necessarily done before made a huge difference.” 

Ma has continued to use this hybrid system to treat other cases, and said that it has worked so well that he is now presenting it to other centers on a national level. 

“[Phoebe] taught us a lot,” he said. “It has certainly benefited several more children since her passing.”

Phoebe’s journey was a difficult and uncertain one, but her parents remember her by being open about her life and continuing to share her story. Despite the pain of losing a child, they speak more of joy than of grief. Joy is one of the things they learned from Phoebe, Owen Lu said. 

“I think because of her strength, we were able to also find the strength to be able to choose to be joyful,” he said.

The family’s time in the hospital held all the good moments of Phoebe’s life along with all the difficult ones, Amber Lu said. They lived at the hospital for four months, she said, and there was beauty during this time even on the day that Phoebe passed away. 

“That’s something I want people to know, too … It can be something that can still be beautiful and hard at the same time,” she said. “Both things can coexist.” 

The family formed a close connection with Phoebe’s care team, and often made rounds with her doctors and nurses. Amber and Owen Lu have stayed in touch with many of them and have even returned to the hospital to visit them. Going back to the hospital could be traumatic for some families, Amber Lu said, but they enjoyed visiting. 

“For us, it actually feels like we’re coming home,” she said.