This was taken in Dec 2008, I was experiencing severe symptoms of MG...
$2,333 raised so far,
$167 to go!
This year, we are proud to announce that we/I have made a commitment to build a team for the 2013 MG Walk, which will take place on March 2, 2013 at Baldwin Park in Orlando.
The MG Walk is an opportunity for the MGFA to support the thousands of children, adults and families that have been touched by myasthenia gravis and show our community that we care and want to make a difference.
Here's a little about me and my MG story...At the age of 24...About 6 weeks after my little girl was born in 2007, I started noticing that I was having trouble walking and also noticed a large bump on my left thigh. I eventually made it to the doctor, after going to about a dozen more doctors and a year later with no answers I was ready to give up! During this time I was frightened to hold my small child because I was constantly falling and hurting myself, and feared that I would fall while holding her. But in November 2008, my family and I started noticing other things that were happening to me that didn't seem right, my speech was slurring, my eyes were drooping, and I had one ugly gnarly smile at that point a very good friend of my husband (Chris) and I's suggested that we try going up to Shands at UF, in Gainesville, Florida. That month I called and made an appointment for the end of January 2009 (their first available). Everything seemed to be getting worse at this point and I couldn't wait to get to Shands in hopes to finally get some answers!
My appointment date finally arrived and after my Neurologist performed a battery of tests which included MRI's, a Lumber Puncture, and a whole lot of blood tests; I was due to go back for my follow-up at the end of February 2009. It was only a month but it seemed like an eternity!! When I went back I was so nervous that I would receive the same answer that I had for the past now almost 2 years, however that was not the case! When my Neurologist discussed the findings of the tests with Chris and I, the words Myasthenia Gravis came out of his mouth, we of course had no idea what it was or what it meant for me. So after further discussion, my heart instantly started dropping all the way to my toes, it was like I was hearing it but I didn't want to believe what I was hearing...it was a complete heart-breaking shock! My world changed that day. I was of course was admitted into the hospital for immediate treatment, because of the severity of my case. I spent 8 days in the hospital away from my beautiful little girl; it was the most trying time in my life. During those 8 days I not only received treatment and underwent major surgery to remove my thymus, but I underwent a major change in the way I view my life. I would no longer "sweat the small stuff,” life is way too short and way too valuable and it can definitely change in an instance.
Since then, I have also been diagnosed with a spinal cord disorder, which has damaged nerves in my spine from my lumbar spine and down. With not one but two auto-immune diseases, I have become quite a complicated case and having both conditions has complicated my treatment. Since being diagnosed I have been on high doses of corticosteroids, numerous medications and several treatments of IVig.
My first year after being diagnosed with MG, was quite possibly the most difficult time of my life. The medications do things to you that you never thought possible, especially at such a young age.
On May 16, 2011 we welcomed our second child a beautiful baby boy into our family. After a very hard pregnancy, shortly after my son was born we were told that my son suffered from transient neonatal Myasthenia Gravis, a condition that affects 10% of all infants born to myasthenic mothers. It was scary to watch him constantly choke while feeding, but perhaps the most scariest part was after we expressed our concerns about our son to his pediatrician, they didn't recognize the signs and symptoms and misdiagnosed him as "just eating too fast!" Luckily for us, my neurologist assured us that he was suffering from transient neonatal myasthenia gravis and that it would soon go away, its not a permanent condition, but to monitor him. Since, since then he has grown into a VERY healthy BIG boy!!!
We are so very blessed that we have two beautiful children despite everything I have gone through because of having MG!!! I have come a long way since first being diagnosed and I couldn't have done it without the love and support of my wonderful husband, beautiful children and my mother and father...they have been there EVERY step of the way!!
My MG has still not gone into remission...we are STILL waiting and praying that one day it will!
This year is more important than the last two years that we have participated in the MG Walk... in September 2012, my MG and Spinal Cord Disorder relapsed (with a vengeance)! I have once again been on high doses of cortico-steroids and an immunosuppressant called Cellcept, which has proved unsuccessful. So, since the medications have not worked, I have been receiving weekly IVig (Immuogloblin) Infusion Therapy, with no success as well. Since all treatments so far have not worked, my neurologists are having to get more aggressive with the treatments. SO, with that being said, I AM ready to kick some serious MG butt this year...Are YOU READY?
We are encouraging all of our family and friends to become involved in this worthwhile endeavor, by either joining the team, forming their own team or making a donation. To find out more information or to get involved today, please visit our family’s MG page at www.mgwalk.org/McKeonFamily or feel free to contact me directly at firstname.lastname@example.org
Thank you in advance for supporting our efforts and making TEAM MCKEON’s third year a bigger success than the last two years.
Thank you for visiting my "MG Walk" personal fundraising page!
I am excited to be supporting the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis.
MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
Please register to walk with me OR make a pledge to help me reach my goal!