"For the past 6 years it has been one of my lifes greatest joys watching Ali grow and play and turn into the spirited little hooligan that she is. But with all that joy there has also been great pain as we had to sit idly by and watch this disorder start to take a hold on her. I love my baby girl and the thought that someday she won't be able to play, or run, or even walk breaks my heart. Seeing her play and hearing her laugh, even with everything that she is going through is why I fight. If she can continue to be strong with everything she has already gone through, than so can I. I AM ALI'S ARMY!" ~ Ali's Daddy (Gabe)
"The gratitude we have for so many things these days & the thoughts of the help we could give to others does keep us going, & while it makes us seem strong on the outside, inside our hearts are breaking. Every time I touch her & feel what this is doing to her my heart just aches so badly. Watching her move everyday in the way only an FOP'er does is so very mood twisting, as I find myself so grateful for the movements she has, while being so sad at what she can no longer do, knowing one day, even what is left will be taken from her if they don't find a cure soon. I cant imagine my little doodle not being able to move. Then I see her smile, only the way that she can, and read the stories of what an inspiration she is to others & I really can't comprehend how she is able to be such an incredible light to us in all the darkness, how a 6 yr old can have this amazing love for life & all thats around her, while going through all of this. As I sit here alone writing this while the rest of the house sleeps, I am not sure if my tears are of sadness, joy, fear or from the amount of pride that I have that she is my child. The 2 things I am certain of is the amount of love I feel for this little girl is the scariest & most amazing thing I have ever felt in my life & that I am the luckiest person in the world to spend every day with my hero. ♥" ~ Ali's Mommy (Angela)
Alexandria McKean is a 9 year old little girl who lives in a small town in the state of Ohio with her parents, Angela & Gabriel McKean and her 3 siblings, Kaiden who is 10, Michael who is 18 and her big sister Lexus who is 19. Ali, as she likes to be called also has many furry best friends. 2 Boxers named Gaeia and Selene who love to play in the sandbox with her and 2 kittens inside, she is looking forward to her first year in 4h and new bunnies soon!
Ali is a very happy little girl who enjoys playing with any toy she can get her hands on! She loves to color, draw and make crafts. She loves to explore and dig in the dirt and sand. She is always on the go! She loves music! She has a few favorite songs, I need you now, Big Green Tractor & many others, but her favorite singer is Reba! She never hesitates to bring cheer to a room with her big smile and her high energy. Although she can be shy at times, she wins the hearts of everyone she meets in minutes.
Alexandria was born with a very rare genetic disorder, called Fibrodysplasia Ossificans Progressiva (FOP), that has taken her large team of doctors more than 5 years to diagnose. While she suffers daily from stiffness and pain she wakes up every morning full of life and greets everyday with a big smile. Ali is truly an inspiration to everyone around her. She is proof that a disability does not define the individual, the individual defines the disability.
In our fight against this terribly disabling disorder we have rallied friends, family and even strangers into an "Army against FOP" ... Ali"s Army. We want to recruit YOU as well to help us, her parents, raise awareness about this rare condition. As her parents, we of course have a fight like no other, refusing to let this gene mutation take over our child, and as Ali's biggest fans, watching her grow over the last 5 years, watching her learn to run and play and be so full of life, it makes our fight that much stronger. We don't know God's plan for Ali or for us, but we do know he sent her to us for a reason, and we will do everything in our power to help her change the world.
Please read more on FOP and it's severe affects on our FOP Info tab.
Head to "The Army" tab to register for free as a member of Ali's Army!!