ONCE UPON A GENE – EPISODE 277: Her Son was Diagnosed with a Rare Disease LMNA-Related Congenital Muscular Dystrophy (L-CMD) — Her Story of DNR Orders and How Decisions Change Over Time w/ 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
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