Music Connects 13-Year-Old Boy and Volunteer Through Paderborn Hospice Care
- The ambulante Kinder- und Jugendhospizdienst Paderborn-Höxter provides comprehensive companion care and grief support for families facing life-shortening illnesses, operating across communities in Germany's North Rhine-Westphalia region, www1.wdr.de reported.
- Julian, a 13-year-old resident of Paderborn living with an undiagnosed muscular disorder contracted in his 30th week of gestation, receives around-the-clock intensive nursing care at home alongside his...
- Schrebb learned about the hospice association through a former colleague a decade ago.
The ambulante Kinder- und Jugendhospizdienst Paderborn-Höxter provides comprehensive companion care and grief support for families facing life-shortening illnesses, operating across communities in Germany’s North Rhine-Westphalia region, www1.wdr.de reported. Founded in 1990 from an initial parent-led initiative in Olpe, the association established its Paderborn location 20 years ago to assist families navigating the complex medical realities of pediatric palliative care.
Music Therapy and Daily Support in Paderborn
Julian, a 13-year-old resident of Paderborn living with an undiagnosed muscular disorder contracted in his 30th week of gestation, receives around-the-clock intensive nursing care at home alongside his parents and older brother. Although doctors initially projected a life expectancy of just two or three years, Julian relies on a wheelchair and a keyboard to communicate his musical improvisations. For the past five years, Erhard Schrebb—a 69-year-old volunteer known as Ernie—has visited Julian every Monday with his guitar to accompany those musical sessions, forming a lasting friendship documented by www1.wdr.de.
These are truly wonderful moments. I’m happy that I can offer my support. And we’ve become friends.
Erhard Schrebb
Schrebb learned about the hospice association through a former colleague a decade ago. Manuela Rudolph, a coordinator with the Paderborn-Höxter team, notes that while the organization acknowledges the limited lifespans of the children they serve, their primary mission remains filling those years with joy.
We know that for many children life is limited, but we simply want to fill that time with as much joy as possible.
Manuela Rudolph
Financing and Operations of the Paderborn Association
The regional association relies on a workforce of five full-time staff members who assist families with administrative tasks, such as applying for financial aid and specialized medical equipment. Operating expenses break down into two-thirds funded through public donations and one-third covered by health insurance providers. Alongside professional staff, 50 active volunteers participate in organizing leisure activities and daily companionship for affected households.
The association extends its focus beyond the ailing child to support healthy siblings who often experience stress and overlooked needs in high-pressure home environments. Programs for siblings include organized trips to the cinema and soccer matches. Furthermore, the organization operates entirely on an outreach-optional basis, stepping in solely when families initiate contact.
Bereavement and Long-Term Family Support
Support from the Kinder- und Jugendhospizdienst continues long after a child passes away. The association hosts a monthly breakfast gathering where mothers, fathers, and volunteers meet in a relaxed setting to share experiences and find solace.
We continued to receive support after our son’s death. Perhaps that was even more important – being supported in our grief.
Kathrin Streitbörger
Additional parents highlighted the ongoing value of these meetings. Miriam Wecker emphasized that the gatherings provide a safe space to express grief away from the expectations of friends and acquaintances. Manuela Dempsey noted that her second son benefited greatly from speaking with other sibling peers who understood the unique dynamics of loss, noting that classmates of a similar age often struggled to comprehend their situation.
Reflecting on the initial hesitation to welcome volunteers into a home already crowded with medical professionals, Kathrin Wibbing, Julian’s mother, acknowledged almost canceling their enrollment. Today, she leaves the door ajar while Ernie and Julian make music together in what she describes as their own shared space.