FOP Awareness Day

Today, (April 23) marks the 11th year since the FOP gene was found. Being a disease that effects one person in every two million, this was huge for my little community. This year iFOPa is doing a campaign titled “Have you seen these toes?”, which is the neat thing about FOP- it’s marked by a missing bone in our big toes making them, well small. This is often over looked because not many doctors have heard of FOP, and often write it off as a malfunction, but not seen as anything to worry about, but I find it fasinating, because if you know me, you know my big toe’s are my favorite part of my body.

Today isn’t about celebration for me, it’s about finding a cure so the kids that come behind me don’t have to deal with the nasty looks or the pain that comes with the disease. It’s about being a mentor for the kids already dealing with the daily struggles of this awful disease. And most importantly, it’s about educating YOU, because the more people that know, the more people that can help.

It’s about finding the strength from within to go about my daily life, dispite my body trying to literally incase me. It’s about finding all the possitives in my life, because I am more than the sterotypes you impose on me, and I am more than FOP.

Ask questions, do research, be the change.

And please for the love of God, compliment my big toes!!!!


I believe in shoes.

I was born February 18, 1996, late at night, but I was completely normal. I was healthy; my family was happy.

Uggs represent comfort; I know I will always have my friends and family by my side, and they will never leave. They love and support me, in everything I do, and I know they will always believe in me- no matter what I chose to pursue. Uggs represent the warmth I feel whenever they’re around.

The only thing abnormal was my big toe- they were small (Why are big toes small? I always wondered) The doctor assured my parents I was fine, all they said was, “She’ll never wear flip-flops when she’s a teenager” [They obviously misjudged me greatly because I love my big toes more than any other part of my body].

Flip-flops represent my carefree spirit and freedom. They symbolize my love of summer and swimming and Cardinals baseball games. Flip-flops represent my ability defying the odds of everyone and loving the life I live.

As a child, I was never home. You’d probably find me on the sports field, or the pool, or the dance floor, or flying high on the trampoline. I loved every single solitary second of it. I was that really annoying child crying on the sidelines if I got benched or couldn’t play my favorite position- yes, sorry I was that spoiled brat (only child syndrome). Though I was five and wasn’t the next Carly Johnson or Matt Carpenter, I believed I was- even though I could barely do a cartwheel or catch the baseball flying at me- sorry there was a pretty butterfly, what was I suppose to do? I constantly believed I had bigger shoes to fill. One Sunday, my dreams of being the star athlete shattered like water when you do a cannonball.

Toms represent my daily struggle to cope, as well as the hardship I endure every single day. My life is far from easy-from having to find someone to do my hair or even put on my shoes. Toms represent that no matter how hard my life gets I can’t give up- because the struggle isn’t everything.

I was a careless, free-spirited five-year-old. I was unstoppable; I didn’t need any help (even if I couldn’t use a toaster- by the way, this hasn’t changed). I woke up like every other Sunday morning at our lake house. My mom was working, and my dad was cleaning our boat so we could get back home. I needed breakfast, so I ran into the kitchen, asked my mom to turn on Spongebob, and lift me up on the bar stool so I could eat while watching the obnoxious sponge. When I was done, I screamed bloody murder for my mom to get me down, because I had better things to do (like sit on the couch instead of watch from a bar stool). When she didn’t come immediately, I decided I could do it myself- I slipped, fell and smacked my back on the tile floor. Wailing, my mom came running, and that’s when she saw the lump on my back. She moved me to the coach and quickly yelled for my dad, who was four floors down and at the end of the dock (yes, she screamed that loud). Hours later, when the swelling didn’t dwindle and the pain was just as real, we packed the car and got me to the doctor where our families like was changed.

FOP? Three letters that changed my life forever. No more sports, no more recess, no more carefree life. My life was over, or so I thought.

I was never the pessimistic child, and I quickly learned I had to change my shoes. Being negative wasn’t something I was good at, and it definitely wasn’t something I wanted to be good at. So, I changed my heartbreak into something positive. I decided I did not need to give up everything I loved; I just had to find a way to participate differently.

So, I put on my tennis shoes, and I changed my life. Like FOP, tennis shoes are not my favorite thing- they’re constricting, and gross. But no matter how unhappy I am (or my feet are), I gotta live my life, and I gotta move on

My life is hard, but I have to accept that. My new life can be everything I want it to be, I just have to find a new way to accomplish the task of making my “new” life all that I want it to be. I knew this was something I could handle; I just had to figure out the best way.

Bare feet represent my freedom. FOP doesn’t encase my life, it doesn’t stop me, it doesn’t limit me. Bare feet represent my freedom to be whoever I want to be, and do whatever I want to accomplish.

Without walking a mile in my shoes, you’ll never know my struggles, and even though that’s a stupid cliché- it’s something I believe in whole-heartedly. My life is challenging, but so is yours. I don’t know your challenges, and you don’t know mine, but change your shoes for a mile, and maybe you’ll see, those shoes aren’t so easy to fill.

Today Marks 3 Years…

Today marks 3 whole [long] years without my best friend, and I’m just can’t believe it.

Ralph was my frist service dog, and best friend from the second I got placed with him in May 2004. I didn’t know it then, but Ralph was every thing I didn’t know I needed. Ralph was so much more than just a service dog for me, but for everyone around me as well. Ralph was always the slowest of the bunch, but for me, he was perfect.


Two years after being placed, Ralph started going to school with me, and from then on he stole the hearts of my classmates and teachers.

When Ralph started getting ‘slow’ he stayed in the office and worked with other students with disablities and it was the best of both worlds- I got to keep my best friend with me, and he got to help others.IMG_1375

“If heaven wasn’t so far away, I’d pack up my bags & go for a day…”

Ralph was set to walk across the stage and get his “doggie diploma” but unfortunately cancer had other plans for my sweet boy. I lost his three years ago today to that awful disease, and not a day goes by that I don’t miss him.


If only I had just one more day, I’d take him to do all his favorite things, and visit all of his favorite people. I’d snuggle him endlessly and show let him meet all of my new friends. But I don’t have that choice, but I just want [him] to know- I think about you everyday, I still love you with my entire heart, and one day, I will see you again, and I can’t wait. Just keep watching over me, Bubba. I love you forever & miss you for always- it’s been a long three years, but I know you’re in a better place.