Amazing Gracie

Every once in a while I’ll be sharing a story about an inspirational individual with RP. Today we are featuring Gracie, an INCREDIBLE 6-year-old girl from Colorado who not only has RP, but who was also diagnosed with Posterior Column Ataxia or PCARP for short. What is that you ask? It’s when an individual is severely ataxic (uncoordinated, like walking when drunk), does not feel any type of pain or even the ground underneath their feet, AND has Retinitis Pigmentosa (a retinal disease that causes severe visual impairment/blindness).

Although Gracie has been hospitalized many times within her young life due to infections from this very rare disease, she is a fighter, and shows us that giving up is simply not an option. When asked what Gracie’s outlook on life was with PCARP, her mom Susan responded: “Gracie doesn’t really consider herself disabled, and uses the remaining 10% of her vision amazingly well. Not feeling pain and also having RP is a terrible combination. Usually, you teach people who can’t feel pain to look at their bodies to find injuries… and usually you teach people who can’t see to feel things. Neither work for her; she can’t feel and she can’t see. That doesn’t bother her though. She adapts to everything. And despite what she’s gone through, she is sweet, funny, smart, sassy, and silly.”

After talking with Susan, I learned that regardless of Gracie’s circumstances, she is still Just like any other 6-year-old girl. She loves to play with dolls, ride horses, play with Shopkins, and watch toy review videos on her iPad. This condition won’t stop her from living her life to the fullest – can you say inspirational or what?!

I am honored to share Gracie’s story with the world, and am begging you to do the same! Gracie’s family has yet to meet anyone out there with PCARP, and is asking us a simple favor: to help them find a family with a case similar to Gracie’s. Let’s share Gracie’s story, and get the word out for this BEAUTIFUL young lady and her incredible momma!

(To follow Gracie's story, visit www.amazinggracie.net)

(Picture is of the one and only Amazing Gracie)