“I am a mother, wife,
chronic pain warrior,
rare disease advocate,
blogger and business
owner with a fierce
passion to leave my


My blog started as a simple way to express myself and manage the daily struggles with my sons rare disease, parenthood, and being a woman and mother. Little did I know it would become so much more then my little diary…


At the core of everything I do is my family. They are my why and my biggest motivation. We are a family who constantly chooses to commit to each other everyday, whether life is hard, easy, beautiful, or ugly. We make a conscious decision to weather the storm alongside each other. We don’t have all the answers – just our experiences, which we hope can benefit and impact other people who are walking in similar shoes.


Our family had the pleasure of interviewing over 20 BWS families from around the world to learn about their experiences and help get their story out. We called these our Because We’re Strong Segments. We have now turned those stories along with other chronic illness and invisible struggles into a podcast. Our podcast is a place for those who struggle silently to no longer do so. We want people to share their voice and their story in the hopes of creating change.

INTERVIEW: Jacob Thompson & TEN20words Because We Are Strong

Jacob Thompson (TEN20) has gone from diagnosis to destiny. His childhood dream was to be a professional athlete. He would tell you that, sometimes, our dreams for our lives need to die before we can live the true dreams and purpose that we were created for. He wouldn't only say this; he lives it every day.In his late teens, Jacob started having trouble performing athletically at a high level. Throughout college and after graduation he had not been feeling right physically for a long time and finally decided to see a doctor. After a series of tests, he was diagnosed with a rare, genetic condition known as Friedreich's Ataxia (FA). FA causes progressive damage to the cerebral cortex, causing difficulties in balance, coordination, and energy production, leading patients into a wheelchair and a shortened life expectancy.This diagnosis was an opportunity for Jacob to give up on his life and his faith. Instead, he chooses daily to make the most out of his situation. He uses his story and his art as a way to inspire others, helping them persevere through their challenges and find their purpose. He has spoken and shared his art for over 10,000 people and counting, and is now working on his first book. Aside from speaking, spoken word, and hip-hop, Jacob, better known as JT, runs a high school mentoring program in Minneapolis and coaches football and basketball. He has a Master's degree from Bethel Seminary, is married to his beautiful wife, Abigail Thompson, and together they are raising their son, Titus.Your trials aren’t meant to break you; they’re meant to make you. Keep on fighting and don’t quit. There is a purpose in your pain. Your struggle is meant to mold you into the person that you are meant to be. God has a plan for you!____________________________________________________________________Connect with JT:TEN20words.com FB and IG @TEN20wordsSupport the show (https://www.patron.com/findyourrare)
  1. INTERVIEW: Jacob Thompson & TEN20words
  2. INTERVIEW: Kierra Butcher & Miscarriage
  3. Those RARE. Girls: Kristine's RARE.
  4. Minisode: Travel RARE.ly
  5. Chronically Chatty: Em, Kate & Two Being Healthy


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I love this shirt because I feel it can apply to so many people and their situations. Its bold and makes a statement!


I love this cropped crew neck because it raises awareness but also elevates your style. Its comfortable and looks great with leggings or my personal favorite – high waisted jeans


I often say that I am always on a mission when it comes to my children. This shirt is super cute and is my favorite print – camo!


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