About Dannell Shu
Thought Leader
“I am speechless when I think of your story Dannell. You represent the spirit
– the core values – the compassion that is really at the heart of what palliative care is. And your immense love for Levi and your family shines through in each word. I am forever grateful. Really the entire organization owes you our thanks for sharing your story. I was overwhelmed with appreciation.
You tell the story of the importance of pediatric palliative care in a way that anyone would resonate with and then connect to the relevance of palliative care in everyone’s life. So grateful I met you. You continue to inspire me.”
Susan Marschalk, Executive Director
Minnesota Network of Hospice and Palliative Care
Follow Mama Shu
“Thank you again for making arrangements to come and share your powerful story with the MN House and Senate Health and Human Services Committees. Committee members hear so many bills and so much testimony that it is often difficult to actually get their attention, but you had them rapt. Your testimony will be remembered
and will make a difference when the
committee decides what to include in their budget later this session.”
Beth Fraser
Government Relations Director
Commission of Deaf, DeafBlind
& Hard of Hearing Minnesotans
My firstborn son, Levi, was born with severe brain damage and a long list of related medical complexities. With this came the diagnosis of uncertainty. We were blessed to have had the "golden experience" of pediatric palliative care from his fragile beginning, into his early years and throughout his life.
We ran an in-home ICU for 7 years to support Levi's complex medical needs. He was hospitalized for only 5 weeks of those 7 years because of palliative care. Levi's life was full of love, joy, family, meaningful relationships, discovery, uncertainty, and Jesus.
In our home we have also juggled Levi's complex needs with that of his neuro-typical Younger Brother. Grief and loss have been a way of life for us since we became parents.
When Levi's hospice and end of life season came in 2017, we embraced it with the same fullness we embraced his life. We applied the lessons learned from palliative care to Levi's end of life, after death care and life celebration planning.
Parent Advocate + More
As a part of Levi's legacy, I have become known as MamaShu. In 2014 I began my work as a Parent Advocate as I discovered our "golden experience" was not the norm, even among friends locally. There are thousands of families in Minnesota living with a child with a life-limiting condition, half a million nationally.* Most of these families do not have access to Palliative Care. Currently I serve as a Parent Advocate in multiple capacities, including Minnesota's first Palliative Care Advisory Council.
Over the years I have had many rich and rewarding opportunities to serve as a public speaker, healthcare educator, published writer, legislative advocate, and be profiled in the media about palliative care. This is in addition to my work as a blogger, providing a look at palliative care from inside the family experience.
Palliative Care is an emerging field of medicine and there needs to be more conversation and education around the unique needs of families whose children need Palliative Care. As a family living within this world, it is my hope that this blog will lend a voice to this effort and the inherently unique spiritual journey we walk.
I aim to be a strategic part of improving education, access, and funding for palliative care and hospice care in Minnesota and nationally.
Thought Leader
I work with individuals, organizations, non-profits, and universities to provide insight from the family perspective on how these goals can become achieved in meaningful and effective ways:
+ Any family who faces the diagnosis of uncertainty to have access to quality palliative care from day one.
+ Values-based, culturally-humble conversations to become normative throughout healthcare.
+ Advanced care directives to become integrated into every healthcare setting.
+ Communities to embrace hospice and death education sooner.
+ Families, providers, and care communities to be equipped and meaningfully supported along the way.
* national statistic from CourageousParentsNetwork.org