Why Am I Running 26.2 Miles?????

Many of you know Arianna, our oldest daughter, was diagnosed with Angelman Syndrome on March 20, 2006. This March marked 5 years since her diagnosis. In light of all the amazing research that has been accomplished with respect to Angelman Syndrome (i.e. CURE in the mouse model) we still have a lot to do.

The best way I can think of to fight this battle is commemorate Arianna's diagnosis with my first MARATHON! My goal is to raise $5000.00 (450 raised to date) by Sept 18, 2011 when I will run the Rochester Marathon in Rochester NY.

 

The Initial Diagnosis For those of you that don't know about AS please go to www.cureangelman.org

When first speaking to the genticists five years ago, we were told that Arianna would never talk, probably never walk, be profoundly intellectually impaired, as well as deal with seizures amongst other problems. In a single moment the dreams we had for our little girl were shattered, and we were crushed. We had a choice, to sit and feel sorry for her and ourselves... or dream new dreams.

We chose to live by the least dangerous assumption (it is more dangerous to assume she will NEVER talk or walk than to assume she will). Arianna has said a few words in her short life, she walks, matter of fact- she runs. She enjoys swimming and gymnastics, dancing and singing. Yes she has faced some seizures, and we struggle with her sleep disorder. But she has already proven that she is a fighter.

 What Arianna Has Taught US...

- It is all about the climb. Every moment should be cherished.

- Baby steps get us through this. Every dollar donated (even $1) will be appreciated.

- "What lies behind us and what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson

What does it mean to CURE Angelman Syndrome?

What would a cure mean to Arianna? A chance to lessen her frustration by allowing her to verbally communicate with others, a life free from seizures, a complete and therapeutic night's sleep, and the ability to learn with less struggle. What would it mean to me... hearing my daughter say "Mommy, I love you", it means more than the world.

 

There is also research, going on right now, with already FDA approved medications, on mouse models, to see if one of them could help with our children's major struggles, balance, tremors, seizure disorder...If one of those could help Arianan to balance better and be able able to concentrate on her fine motor skills, I believe it will happen.

I believe our kids will one day be seizure free. I believe there will be something that can help all the nuerons fire smoothly the way they should. The research shows that our children's brains are perfectly formed, but the pathways just get stuck, a traffic jam of sorts. A favorite quote of mine is by a young woman, Harli Kirkpatrick, who has Angelman Syndrome, she uses a typer to communicate her thoughts. She is such an amazing inspiration to Arianna. She says "Brain no broken but some curves in road"~Harli Kirkpatrick

To learn more about Arianna's Awesome Adventure and her journey with Angelman Syndrome please go to our family blog ariannasawesomeadventure.blogspot.com/ or our family website www.ariannasawesomeadventure.org

No amount is too small!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!Thank you for visiting my fundraising page!