Mott family’s 5K event has raised more than $750,000 for palliative care patients

Pain, discomfort, and extended stays in the hospital disrupt the lives of many children and young patients with chronic conditions or long-term illnesses.

The time they spend coping with symptoms or receiving treatments is time away from family, friends, and the things they love doing.

Claire Sheeren saw firsthand how a complex, progressive, and incurable immune disease impacted her sister Elizabeth.

Elizabeth had already been a patient at University of Michigan Health C.S. Mott Children’s Hospital for several years when complications from her condition landed her in Mott for more than seven months during her senior year of high school.

“It was difficult seeing her go through that and miss so much of her senior year,” Claire says. “She worked so hard to stay caught up with school and apply to colleges. She got accepted to U-M, and then it all just went away.”

For Elizabeth, every stay in the hospital also took her away from two of her biggest passions: theater and music. But with the help of the Pediatric Palliative Care Program at Mott, she was able to not only get some relief from her symptoms, but find ways to express herself and reconnect with the activities that brought her joy.

Finding comfort and support through uplifting care

Claire remembers going to Mott with her sister when they were kids, and the Child and Family Life team would explain to both girls the different tests and treatments Elizabeth would be receiving by using teddy bears to show them how a nasogastric (NG) tube worked or what to expect when getting an IV.

Elizabeth returned to Mott many times as she got older and the hospital’s Music Therapy Program gave her an outlet to continue pursuing her talents, as she sang and performed with a ukelele or on the piano. She also found opportunities to express her creativity through the Art Therapy Program, which provides patients with tailored artistic activities to give them meaningful and memorable experiences.

These programs, combined with the palliative care that Elizabeth receives, have helped to ensure that she gets the most well-rounded and comprehensive care possible. The Palliative Care team manages the complex and chronic physical challenges she faces while finding ways to encourage and support her psychological, social and spiritual needs.

Even during difficult circumstances, Elizabeth’s palliative care providers have figured out how to send her home with necessary medical equipment so she didn’t have to spend as much time in the hospital.

Elizabeth’s Courage Fund

It was during Elizabeth’s lengthy hospital stay during her senior year that Claire decided she wanted to do something to support the programs that had helped her sister and improved the lives of countless other young patients at Mott.

As a high school sophomore, Claire sat at the kitchen table with a friend and talked about what they could do to support the Pediatric Palliative Care Program. That discussion turned into the first Run, Walk N Roll 5K in 2019.

“We wanted to raise money for palliative care because they have really been the driving force in Elizabeth’s care — they have really brought in a lot of light during very difficult circumstances” Claire says. “They look at the whole person beyond a medical diagnosis and ask how someone is doing mentally, emotionally, and spiritually.”

Held at Grosse Pointe South High School, the first event welcomed more than 500 participants and raised $46,000, enabling the Sheeren family to start Elizabeth’s Courage Fund at Michigan Medicine.

The mission of Elizabeth’s Courage Fund is to improve the quality of life for children and families facing complex chronic or terminal conditions through innovative services within the Palliative Care Program.

Walking, running, and rolling to make a difference

The sixth annual Run, Walk N Roll 5K, held virtually throughout June 2024, was another huge success. The virtual format encouraged participants near and far to join the cause on foot, in wheelchairs, on adaptive bikes, or in strollers.

The event received support from 82 sponsors and more than 500 donors. More than 450 people participated across 39 different states, 18 countries, and six continents.

This wide-reaching generosity helped the Run, Walk N Roll 5K to raise more than $160,000 this year. In its six years, the event has raised more than $750,000, with 100% of the proceeds going to Elizabeth’s Courage Fund.

Since being established, Elizabeth’s Courage Fund has helped to support several family-friendly services in the Mott Palliative Care Program, including fully funding a dedicated Child and Family Life specialist on the Palliative Care team. This person helps patients cope with the stress of hospitalizations and serious illness, and provides bereavement support for siblings and parents.

The fund also supported the Mood Lifters program, an intensive 15-week mental health wellness group geared specifically toward parents of children with complex health care needs. More than 80 families have already benefited from this program, and their participation was fully funded by Elizabeth's Courage Fund.

A dedicated music therapist for palliative care patients was also able to join the team thanks to support from the fund. The therapist tailors music therapy for inpatient, outpatient, and home settings (via Zoom) to help patients cope with the burden of serious illness, and experience the joy and healing power of music.

The fund has also supported medical massage therapy and art therapy activities — and is looking to add a dedicated art therapist for palliative care patients.

“It means so much to my family and the other patients and families at our events to see our community coming together and being so incredibly generous, loyal, and caring,” Claire says. “We just can’t thank everyone enough — their support is changing people’s lives.”

To learn more about the Run, Walk N Roll 5K, visit run-walk-roll.org. You can also make a gift to Elizabeth’s Courage Fund to help bring hope and comfort to families with children facing serious medical challenges.