Hello! My name is Malorie Alexis Fox - I'd like to share my story with you! I have Spinal Muscular Atrophy (SMA), type 2. I was born on September 17, 2002. Right on my due date. Perfect right from the beginning! I am my parent's first child - they had been waiting their whole lives to meet me.
Okay, well, the first six months of my life were just like every other child - no concerns whatsoever. Then, around 7 months of age, my parents started to notice that I wasn't sitting up or rolling over or bearing weight on my legs like the other kids my age. So, we made an appointment with a neurologist - even though my pediatrician assured us that everything was probably okay - kids develop at different speeds - I just might be a "late bloomer". On July 17, 2003, at the age of 10 months, we went for DNA testing and an EMG test. And then finally, after weeks of excruciating waiting and worrying, on August 4, 2003, our worst fears were confirmed - I did, indeed have Spinal Muscular Atrophy, type 2. The only advice the doctor gave my parents that day - take me home and love me for as long as it would be possible. There is no treatment for SMA - there is no cure. SMA is a degenerative disease that weakens the body's muscles until they can no longer function - that includes the ability to breathe. This could not be happening to our perfect baby girl - this is not the life that we had planned! The first thing my mommy could think of was that I would spend the rest of my life in a wheelchair - that was the worst that she could imagine at the time. Then the statistics came: SMA is the #1 genetic killer of children under the age of 2, and 80% of children die before their 1st birthday. I would never have the muscles to crawl, sit, stand, or walk.
Well, it took us quite awhile to come to terms with this new life we were given - my family definitely went through a huge grieving process. But - let me tell you something -- I chose my mommy and daddy - I picked them because I know they will not let me down - they will fight this fight until we win! This is not the life they had planned for me - but they are doing everything in their power to keep me here - healthy and happy! My entire family has discovered there is a new-found happiness after accepting such a life-changing diagnosis. My parents have realized that how they view SMA - that is how I will grow up viewing SMA. I AM HAPPY - I am not in pain - I am not dying - I am living and adapting constantly to what God gave me. I have a brilliant mind, exceptional character - I am funny, and quite cute - if I do say so myself!! Yes - I drive rather than walk - so what? Yes - my mommy comes in to roll me over several times each night while I'm sleeping - so what? My mommy & daddy focus on the things I CAN do, not those that I cannot. They are creative and inventive - always finding new ways for me to play - and celebrating EVERY new accomplishment that I make!
Please follow my journey by visiting this site often - leave me messages, and my mommy will keep the site updated - with everything new and exciting that's happening in my life! Also, please keep me, and my family, in your thoughts and prayers - we could sure use a miracle!
Hugs & kisses,