A Rare Collection – Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
ONCE UPON A GENE – EPISODE 104
A Rare Collection- Stories of Courage with Felix Townsin, Erica Jolene Stearns, Mahrynn McLaughlin and Brianna Colquitt
There’s power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. Felix Townsin, Erica Jolene Stearns, Mahrynn McLaughlin and Brianna Colquitt share stories of courage.
The day his sister lost her life to Blau Syndrome, Felix thought his world was over. Courage is the ability to do something that scares you or to have strength in the face of grief and pain. Felix knows he’s learned to be courageous from Lexi, and he’s learned that courage is moving through the pain with no shortcuts.
Erica Jolene Stearns
Erica learned courage at a young age. As she grew, having courage meant going to the swimming pool with trach tape covering her trach, assuming the risk of diving into the water, and answering inquiries about her scars. She frequently found courage in herself when confronted by bullies. It took courage to ignore them and strength to persevere through the pain, facing the bullies again and again every day. In adulthood, courage was wrong with her child and saying it over and over again when she felt no one was listening.
Mahrynn shares a lesson from improv class. Leaning into living with her disability, Mahrynn sometimes feels too much or too little. In living with and not despite disability, she’s learning to live courageously.
Brianna used her training in CPR when she found her neighbor unconscious. She researched the heart, the signs and symptoms of a heart attack, which later helped her to quickly notice the signs in her dad. Through these experiences, she began working with the American Heart Association and has pursued a career in nursing.
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