ONCE UPON A GENE – EPISODE 277: A Mother’s Son Was Diagnosed with the Rare, Debilitating Disease LMNA-Related Congenital Muscular Dystrophy (L-CMD) — A Mother’s Story of DNR Orders and How Those Decisions Change Over Time with Hannah Lowe

Hannah Lowe is back on the show. In this episode, Effie and Hannah discuss do not resuscitate orders for children with rare diseases. Hannah shares her experience with her son Austin and how the conversation around DNRs came up for their family. They talk about the decision-making process, how feelings around these choices can change over time, and why these conversations matter in the rare disease community.

The episode also touches on planning ahead, the emotional side of these decisions, and the importance of having these talks before a crisis hits.

In this episode:

• Hannah’s update on Austin and the L-CMD Research Foundation
• How the DNR conversation first came up for their family
• The personal and practical side of these decisions
• Why more open discussion is needed in the community

Links:

• Hannah’s first appearance on the show (Episode 108): effieparks.com/podcast/episode-108-hannah-lowe-lcmd-research-foundation
• L-CMD Research Foundation
• Instagram

Listen now and subscribe for more conversations on rare disease life, advocacy, and family stories.