Be the change- ADVOCATE!

With over 7,000 known rare diseases, it is difficult for anyone to have an in-depth understanding of the rare disease community. This lack of awareness contributes to common obstacles that rare disease patients face, such as delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists. On more than one occasion when we mentioned our daughters diagnosis it was, "what?"  No one knew what it was, how it affected her or our family. How could this child be affected by something but physically have no change in appearance. Even insurance companies didn't have some policies to manage coverage, information simply wasn't in their manual.  

Advocacy is key. One way to provide advocacy is by raising awareness on Rare Disease Day. 

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

  • Eighty percent of rare diseases are genetic in origin.
  • Fifty percent are children.
  • 30% of children won't live to see their fifth birthday. 
  • Ninety five percent of rare diseases don't have a single approved FDA treatment. 

Think of them statistics. Imagine yourself in that position, or your child. 

Rare Disease and Rare Disease Day are pretty powerful in our lives. Our daughter was diagnosed with a rare disease when she was 3 days old. We never heard, knew or were expecting that diagnosis. As much as I don't want to think our daughter is a statistic, the reality of it is that she is, in more than one way. She battled her rare disease bold and brave for 5 years, 7 months and 3 days.

The obstacles we faced as a family were un-real. The decisions we had to make, the thought processes as young parents on top of being new parents are difficult to describe. Due to the many challenges we first hand experience is the drive behind Braylee Butterflies Family Assistance fund. If you are a "RARE" family needing assistance, please fill out an application. 

To other parents fighting for their child with a rare disease. Know that there's more to your child than their condition. They are, or will be, smart, funny and beautiful no matter what. I bet they are the best thing that happened to you. 

Despite the challenges and how you learn to adapt, its hard not to compare. Why cant there be a space where everyone belongs, regardless of disability or disease. It is like molded areas of society where people have disabilities, especially rare, are overlooked and it creates a challenge on many levels. I often reminded my self that her disease and the disabilities it brought her was an asset. She was Gods way, Gods purpose, and uniquely her. She is the reason we advocated then, and will advocate now. We hope to be the change in the vision many view rare diseases, and disabilities. Our Brave, Bold RARE Warrior is also our Rare Angel of HOPE. 

Show your Strips: We care about RARE. 

In honor of Braylee Jo, our RARE angel. 

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