Happy Rare Disease Awareness Day!

Today is Rare Disease Awareness Day. I hope you have learned a bit more about the rare disease of Epidermolysis Bullosa and how it affects our family and our son Graham. I sincerely want to thank EACH and EVERY one of you who help us in our mission of getting EB into the forefront, and out of the background. It is truly appreciated and means the world to us. Thank you for being a part of our journey.

Epidermolysis Bullosa might have come into our life on that fateful night of December 5, 2019, but so did our beautiful baby boy, Graham Everette. It’s funny how life can sometimes give you both a storm and a rainbow at the same time.

Graham is the light of our lives. His spirit is strong, his smile is infectious, his laugh is contagious, and his heart is pure gold. Although we would take away the diagnosis of EB if we could, we wouldn’t change a single other thing about our baby boy. He has taught us an incredible amount in his 14 months of life about unconditional love, resiliency, courage, and perseverance. We believe Graham is fearfully and wonderfully made.

I hope when people see Graham they see so much more than just EB. Yes, he has a diagnosis... one that comes with blisters, wounds, scars, and bandaging. But, this does not define him - it is not all that he is. Graham is a warrior. He is a son, a grandson, a nephew, a friend. He enjoys listening to music, reading books, playing with his toy balls, going for runs in the jogging stroller with mommy, and being silly with daddy. He is happy, and he is loved beyond measure. This is what I want people to understand - EB is a page in Graham’s book, it’s not his entire story. We believe he will move mountains and change this world.

So today, on Rare Disease Day, I urge you to look beyond a diagnosis. Let’s stop making assumptions based on a diagnosis alone. Let's stop speculating what someone can or can’t do based on one page in their book. That page can certainly give us important information, but let’s look WAY deeper than that. Let’s turn each page and read the chapters to see people for ALL that they are. Each person we meet has their own amazing and unique story to tell if we just take the time to listen.

Rare is MANY Rare is STRONG Rare is PROUD

#thisisEB