Episode 81 Brittany | Fixers + People Pleasing Mamas: finding community in Rarity

Every one of us is special. Every one of us needs connection. When we connect with people who are “like us,” how do we find connection in rarity? Where do we go for support when we are one of a very few who share a similar story?

Today, I have the pleasure of introducing you to Brittany. Brittany’s daughter Everleigh has a rare disease called SetD5. At age 3, she is one of approximately 300 others worldwide with this diagnosis. In fact, she is the only one with her specific subtype. Because of how rare her disease is, there is a lot of unknown about her future. But her present is filled with love. 

Brittany shares with us the importance of advocacy, providing a voice for your child when even the doctors don’t fully understand what is going on medically. She shares her tips for finding and building a community even when there are so few who share exactly what you are going through. She shares the joy and light that is Everleigh. What I especially loved is how open she was about the process. This is a journey. We all are doing our best to move through this journey one step at a time.

“I start small. I’m starting small and I will work my way up, as I can, but I’m learning.” -Brittany

Here’s what Brittany discussed that you do not want to miss: 

  • Introducing Brittany (2:24)
  • All about Everleigh (4:16)
  • Competing diagnoses (6:43)
  • Spreadsheets and planning (10:11)
  • Asking for help (14:49)
  • Carrying the mental load (18:44)
  • Connection in the community (22:56)
  • Raising Rare (25:13)
  • What gives Brittany hope (29:19)

Rare disease can be a place of fear, sorrow, and anxiety. But on the other side of that is hope, light, and joy in the small moments. I hope Brittany has shown you that there is a community out there, with others who understand what you are going through, even when you are rare. How do you find community?Let me know in the When Autumn Comes Society or send me a DM on Instagram! I’d love to hear about how this helped you.

Connect with Brittany:

Catch up with Suz:

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 4AM Moms with medically complicated, rare, beautiful children. 

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