Desirae Ava Grace Cechin was born in Palm Springs in 2009. She went by the nickname Desi, which she insisted on from the time she could talk. A spirited and creative little girl, she was diagnosed with a rare childhood cancer in 2014. The news of aggressive stage-4 high-risk neuroblastoma was devastating, and two years of painful treatments followed. For patients fighting pediatric cancer in the Coachella Valley, the overwhelming diagnosis is compounded by the fact that there are no pediatric oncologists in the area. Patients often have to travel to Loma Linda, Children's Hospital of Orange County (CHOC), Texas, or New York City to receive treatment. Approximately 70 to 80% of patients in the Valley are on Medicare, and there is a shortage of resources for younger patients. A life-threatening pediatric illness throws an entire family into turmoil. Travel costs can be onerous.
I spoke with Jessica Bowser, vice president of the Desi Strong Foundation. She currently works at Eisenhower Imaging Center. Bowser was born in Palm Springs and currently lives in Indio. Desi was Bowser’s child’s preschool friend, so Bowser immediately became involved to help Desi and her family navigate Desi’s diagnosis. A group of friends and supporters mobilized and raised funds to help get Desi treated at the Memorial Sloan Kettering Cancer Center in NYC – the oldest, largest, and one of the leading cancer treatment centers in the United States. Desi went through grueling treatments, but sadly lost her battle with cancer at age 6 in March 2016. Because so much love, support, and funds were marshaled by the community and beyond, the Desi Strong Foundation was created to help Coachella Valley families with children diagnosed with cancer.
The foundation is a 501(c)(3) non-profit organization that provides food, gas, and travel expenses for families; for example, it recently helped a family replace tires for their car. It provided a mortgage payment to one family to assist with their immediate needs. “The Desi Strong Foundation shines a light on pediatric cancer through awareness, patient and family support, and raising funds for a cure,” Bowser says. The foundation created a Desi Strong doll to honor Desi and help other children manage their cancer journeys. The therapy doll has no hair and a removable port-a-cath – a device used to administer medications. Desi used her dolls and stuffed animals to role-play; she would act like a doctor or nurse, take their vitals, and administer chemotherapy. This play brought comfort to Desi and was a significant resource during her treatment. Today, the Desi Strong Foundation provides dolls for free to local patients and those being treated at Loma Linda. Bowser says they often send dolls across the country and abroad to children in need. Sometimes, the dolls are for siblings; they offer a tool and outlet for them to understand and support their brother or sister. The Desi Strong Foundation has helped 71 families since 2016 and is currently assisting 30 local families.
The Desi Strong Foundation’s board members include Desi’s parents, Terry Cechin and Laura Palada. They were instrumental in the creation of the foundation, but have since stepped back. Cechin lives in Palm Desert; Bowser says he still ships out dolls every Friday. When Desi was in treatment, Palada managed a social media account and wrote a blog as a coping mechanism, informing people about her family’s experiences. Desi’s grandmother, Carley Cechin, is the foundation’s treasurer. Olivia Sale is a family advocate, and one board member, Hannah Shaffer, was Desi’s babysitter. Bowser says none of the members are paid and the organization is completely run by volunteers. “To date, we've raised $1.19 million dollars, which includes a recurring angel donor pledging $100K per year,” she says. In addition to providing financial assistance and support to families, a significant portion of money raised by the foundation is donated to fund pediatric cancer research. “We’ve donated $279,000 towards pediatric cancer research to both Loma Linda and Memorial Sloan Kettering,” Bowser says. “Donations are typically made on Desi’s birthday in June.”
The Desi Strong Foundation became quite well-known when Desi was in treatment, and she touched many lives across the country. In the early days, word of mouth supported the fundraising campaign. Now, events such as golf tournaments, “Ballin’ for Desi” basketball tournaments, and the recent 7th Annual Desi Strong Run/Walk 4 Kids (which occurred on Feb. 8 at Rancho Mirage Community Park) are held to raise funds. The foundation’s website sells “Desi Swag” items including Desi Strong dolls, sweatshirts, mugs, and gold ribbons to honor Desi. Much like the omnipresent pink ribbons for breast cancer awareness, gold ribbons shine a light on pediatric cancer. Survival rates have improved significantly since the 1970s. Nearly 15,000 children and adolescents are diagnosed each year in the U.S. Approximately 85% of children with cancer now live five years or more after being diagnosed with cancer. “After accidents, cancer is the second leading cause of death in children ages 1 to 14,” according to the American Cancer Society. “About 1,040 children under the age of 15 were expected to die from cancer in 2024.”
Desi used to say, “I love you infinity,” so the Infinity Campaign offers gold ribbons shaped like an infinity symbol. The Desi Families Challenge asks people to set up a recurring $8 donation to help support children fighting cancer. Any amount is appreciated, and you can find a QR code on the website to submit a donation. For more information on ways to donate, support, or volunteer, go to www.desistrongfoundation.org.
Desi would be a sophomore in high school now. Her absence is a constant reminder of the important work of the foundation. It helps lighten the load of families who are doing the best they can in challenging circumstances. Desi would not be defined by cancer, and her smile, attitude, and joy for life live on in the work of the Desi Strong Foundation.
