Thank you for visiting my fundraising page!
Why participate in the Survivor Mud Run in 2012? Because I am lucky enough to be able to climb, jump, and run, but my son Aaron cannot. Aaron has type 1 Spinal Muscular Atrophy (SMA).
After a perfect pregnancy and delivery, Aaron was born on January 24, 2008. It was by far, the very best day of my life. Robert and I took our little bundle home from the hospital two days later, and started life as a family of 3.
Every new experience with Aaron was amazing, and I was absolutely in awe of this little person. Life was as close to perfect as I could ever expect.
Then April 21, 2008 arrived. Our pediatrician had scheduled a date with a neurologist because of some concerns over Aaron's development. I should have done research. I should have checked for reflexes, but I didn't and in the month between Aaron's 2 month well child check and April 21, my life as a first time mom was a blissful as it could be.
I went to the appointment with Aaron alone. Robert had to take a day trip to San Diego. We assumed it would be a routine appointment. We were wrong.
Within 10 minutes of talking with the neurologist, I was given a short list of some diseases that could account for limited movement. SMA was mentioned first, but before the exam, the neurologist said that "the worst disease of them all" was probably not what Aaron had. I jotted down notes in my book (SMA, myotonic dystrophy, myopathic muscular disease, metabolic errors), and started to get that sick feeling in my stomach, realizing that something may really be wrong with my perfect Aaron. Funny how almost 4 years later, looking at those notes I took back in 2008, all of those sickening feelings come rushing back at me like a 10' wave waiting to pummel me.
I handed Aaron over to the neurologist, and the exam started.
Reflexes: none
Aaron was held up in the air, face down, and his arms and legs hung like a rag doll. Theneurologist then placed Aaron face down on the cold steel exam table, arms to his side, to see if Aaron could move. All Aaron could do was scream.
I called Robert and told him that something was wrong with Aaron and told him to get home right away.
The rest of the appointment involved consultation with the other staff neurologist, and ended with the comment that Aaron likely had SMA (there is a little star by SMA in my notebook. My notes also read "2 years or <.... ALS of children". I asked if there was anything we could do, and as the doctor walked out of the room, all he said was "Pray that I am wrong."
And so began our journey into the world of Spinal Muscular Atrophy, the leading genetic killer of children under 2.
Our journey has taken us to Utah and Stanford to see specialists in SMA. I know Aaron's medical record numbers for UCDMC and Stanford by heart, and my son has one of those "expanding medical records" that requires more than one folder.
Aaron has just celebrated his 4th birthday! Two years more than his neurologist, pulmonologist and pediatrician gave him after Aaron was diagnosed with SMA.
I have learned with Aaron that hope is my strongest ally against SMA. Hope for a healthy, long life for my son, and hope for a cure. I later found out that SMA is the neurologic disease "closest to a cure" according to the NIH. So there is a blessing in this curse of a diagnosis that is SMA.
A cure takes more than hope, though. It takes money. Researchers are on a race to find a cure, just as I am in a daily race to ensure Aaron is healthy enough to live to see that cure. That is where YOU and the GWENDOLYN STRONG FOUNDATION (GSF, www.thegsf.org) come in.
I am running in the Survivor Mud Run to raise funds for the GSF and also to raise awareness about SMA. You see 1 in 40 people carry the gene that causes SMA. I have yet to meet any parents that said "yes, we knew our child could have SMA" yet there are thousands of children diagnosed every year.
Will you help?
Will you help Aaron to be a SURVIVOR so that one day he can look forward to a long and healthy life?
My goal of $4000.00 is high. That equates to $1000 for every year since Aaron's diagnosis. The Survivor Mud Run takes place on Aaron's 4th "D-Day", exactly 4 years to the day that we sat in the neurologist's office and were given the news no parent wants to hear.
I am now running in the Mud Run both on April 21 AND on April 22!
Will you join me in this effort? Come and be a part of Aaron's Army. When we believe, we can accomplish anything!
Now for the details about your donation:
1. It is tax deductible
2. Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
If you can't donate, then will you walk, run, bike or climb so that children like Aaron can too?
Thank you so much for any support you can offer, and don't forget to forward this to anyone who you think might want to donate too!
With Sincere Gratitude (and muddy hugs too),
Meri