Jessica | Finding the Cure: Navigating Rare disease and research

Every family with medically complex children is impacted in some way by advances in medicine and therapy. Some have the benefit of recent developments. Others hope for cures and treatments on the horizon, yet just out of reach when they are needed most. At some point, do we all believe we will be the ones to finally beat the diagnosis? 

In this episode, Susan sits down with Jessica. Jessica is a fellow mito mama. Jessica is also a fellow bereaved mama. She shares the story of her beautiful daughter Dahlia, who was diagnosed with MERRF syndrome. They chat about the steps that led to diagnosis, navigating care for her daughter’s medical needs while providing normalcy for her other children, and the opportunity to participate in research towards treatments for this disease. 

Jessica shares that the journey toward participating in research was not a smooth one, and not one that led to a fairytale ending. Even with this, she has a beautiful perspective on the benefit of contributing to medical developments.

“Because some of the words were too scary, I pushed them to outside of my head altogether.” -Jessica

Here’s what Jessica and Suz chatted about that you do not want to miss:

  • Introducing Jessica
  • Validation (8:11)
  • The ones to find the cure (13:50)
  • Accepted (17:06)
  • The shift (19:46)
  • Getting in again (20:31)
  • Driving force ( 24:24)
  • What gives Jessica hope (29:56)

Every special needs family has been impacted by research, though not all have the opportunity to participate in the research directly. Do you have a story to share? Come visit us in the When Autumn Comes Society or send me a DM on Instagram! I’d love to hear from you.

Catch up with Jessica: 

Catch up with Suz:

Instagram

When Autumn Comes:

Thank you so much for joining me on this journey. Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories from other members of our medical and disabled community. 

If you enjoyed this episode, please leave us a 5-star rating and a review so we can reach more 4 am moms with medically complicated, rare, beautiful children. 

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