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2014 Orlando MG Walk

Amber McKeon
Team: Team McKeon


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Donor Roll
Thomas Berrios $500.00

Odilia Berrios $500.00

Branden Mitchell $100.00

Renee Brown $60.00

Ashley Russell $50.00


Christi Vandegrift $50.00

Ashley Emery $50.00

Lydia B. Doran $50.00

Tara Materni $50.00

Jocelyn Kehler $50.00

Fussell Family $50.00

Pearce Family $50.00

OFD Station11 'A' Shift $50.00

Matt Hereford $50.00

Olivia Perin $50.00

Ellen Hrabovsky $50.00

Lara & Mike Tonelli $50.00

Leo & MaryAnne Clark $50.00

Tony & Maria Figueroa $30.00

Dorothy Rugen $25.00

Allison Cassedy $25.00

James White $25.00

Natasha Berry $25.00

Allison Reed $20.00

Natalia Goldenberg $20.00

Jill Greco $20.00

Kaitlyn Evans $10.00

Amy Owens $10.00

Jennifer Christ $10.00

Brigitta Riner $5.00

Meredith Palmberg $5.00

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Are you human? What is 3+2?

Linda Boston: Good luck, I have a son who had an anuresym at age 14 which was OMG 36 years ago. He has been paraylzed and has brain damage from the surgerys but he never left us and we didn't leave him. He is home

This was taken in Dec 2008, I was experiencing severe symptoms of MG...

Goal: $2,500

90 percent raised
$2,140 raised so far,   $360 to go!

   Here we are again! This year, we are once again proud to announce that we/I have made a commitment to build a team for the 2014 MG Walk, which will take place on April 27, 2014 at Baldwin Park in Orlando. For the last 3 years our Team McKeon has been incredibly successful and we hope that this year will be the best one yet. 

   I was diagnosed with Myasthenia Gravis in 2009 (it's been 5 {LONG} years)...since being diagnosed it has been a uphill battle with this disease. 

Here's a little about me and my MG story...At the age of 24...About 6 weeks after our 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.

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, 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! 

At the beginning of 2013, my neurologist suggested seeing a neuro oncologist, and it was then that they finally found yet another antibody (GAD65) that my body is producing that is attacking my central nervous system causing me to have a spinal cord disorder, which has damaged nerves in my spine from my lumbar spine and down. With not one but two neurological 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.

This year is more important than the last three 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 received weekly IVig (Immuogloblin) Infusion Therapy, with no success as well. I experienced a MG crisis in March, in which I was hospitalized for 8 days, in the ICU for 3 of those days! In April, my neurologists decided that they needed to get very aggressive with both diseases so I started Chemotherapy to "restart my immune system" for it to start doing the "right" thing and stop attacking itself! I just finished my last chemotherapy (Cytoxan) on February 7th however after it has proved to be completely unsuccessful! We are currently out of treatment options. 

      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? 

Please will YOU and your family STAND UP for Myasthenia Gravis and JOIN us as we support me in MY FIGHT with MG!

I know I speak  for myself along with so many others that are suffering from this lifelong battle that some have even lost their lives to...please help spread awareness so that one day we may have the funding for research to "live in a world without Myasthenia Gravis!" 

We are encouraging all of our family and friends to become involved in whatever way possible, by either joining the team, forming their own team or making a small donation. So, please feel free to forward this to your friends and family to help spread the word and keep donating Plasma, it has saved my life 3 times. Please feel free to contact me directly at ambmckeon@gmail.com

We truly thank you from the bottom of our hearts for supporting our efforts and making TEAM MCKEON’s fourth year a bigger success than the last three years. 

Yours Truly, 

The McKeon Family

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This is was taken in June 2009, 3 months after being diagnosed and while on treatment! This was the BEST I have EVER been!!

This was taken in 2006...3 years before being officially being diagnosed but only a year before experiencing symptoms!

This was taken in Nov 2008, when we realized something seriously was wrong.

This was Team McKeon FIRST year Participating at the MG WALK!!!

This was Team McKeon's SECOND year participating at the MG WALK...we were 35 Strong at the walk BUT 99 strong with DONATORS!!!

Last year, Team McKeon was the biggest team yet…at 47 walkers and over 99 donors!

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