If you’ve met 8-year-old Ryan, you’ve likely met Serafina, too. Serafina is a life-size stuffed orange tabby cat with a bit of a sassy side, just like Ryan.
When Ryan received a bedside visit from Andrew M. Levy Music Therapist Emily Offenkrantz, MT-BC, NICU-MT, Serafina danced and played the xylophone with gusto. Ryan and Emily giggled together as Emily strummed her guitar and they made up a silly song about Serafina.
Emily and her music had changed everything for Ryan.
Ryan has been through a lot in her young life. Diagnosed at 18 months old with Fanconi anemia (FA), a condition caused by mutations in genes that play a role in DNA repair, Ryan lived under the threat of developing bone marrow failure, cancer, and many other systemic issues.
Her family, who lives in Chandler, Arizona, learned that Stanford researchers were pioneering a treatment that includes stem cell transplants from a patient’s family member and doesn’t require radiation, which is particularly dangerous for those with FA.
“Everyone we read about at Stanford was a stellar scientist and rock star in this research,” Ryan’s mom, Carly, says. “We reached out for a virtual consult and then made a trip to the hospital in 2021 for an all-encompassing visit with hematologists, audiologists, cardiologists, endocrinologists, and more.”
A Plan Is Made
Ryan was doing well at the time, and doctors encouraged her to return home and continue to enjoy normal childhood activities like playing with her older brother, Christian, or snuggling with her real-life cat, Bridger. Meanwhile, the team, led by Rajni Agarwal, MD, put together a game plan for the eventuality that Ryan’s condition might deteriorate, and she would need a stem cell transplant.
Ryan’s older sister, Mikayla, didn’t hesitate when she learned she could provide lifesaving stem cells.
In July 2023, Ryan’s condition changed. She had caught the flu a few months earlier, and because influenza is frequently associated with suppression of bone marrow production, her blood cell counts struggled to recover.
The family packed up their car and drove from Arizona to Palo Alto so Ryan could participate in a clinical trial under the watchful care of Agarwal and other renowned physician-scientists Agnieszka Czechowicz, MD, PhD, and Alice Bertaina, MD, PhD.
Ryan Meets Emily
Board-certified music therapists like Offenkrantz—supported by philanthropy, including your gifts to the Children’s Fund—are the crucial members of the Packard Children’s care team. They use musical instruments and techniques to comfort patients and their families, reduce anxiety and stress, support difficult medical procedures, and more.
“When we arrived at Packard Children’s, Ryan struggled with not having control of what was happening,” Carly says. “She wouldn’t take any medication. Emily was able to come in, earn Ryan’s trust, and help her through those hard moments.”
The Gift of a Lifetime
On August 2, 2023, Ryan received her sister’s cells. The care team made a “Happy Transplant Day!” sign covered in encouraging notes.
There were many sleepless nights during the 100-day isolation period that followed. Emily, who is the Andrew M. Levy Endowed Music Therapist, provided sessions that became more important than ever to combat Ryan’s loneliness and discomfort and help her regain strength depleted by her treatment.
When the care team cleared Ryan to return home, she quickly caught back up on her Bridger snuggles and being the empathetic, caring little girl who loves animals and writes notes to her brother.
In August, Ryan returned for her one-year post-transplant appointment. She was thrilled to see her compassionate and brilliant care team, who contributed everything from revolutionary treatment options to comforting songs.
“You want people to fight for your kiddo as hard as you do,” Carly says.
Thank YOU for being part of the team that does everything possible for children like Ryan.
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This story originally appeared in the Fall 2024 issue of Children’s Fund Update.
