"Evan had Jenny's back" during the Chicago Marathon 2012

Our good friend Jenny ran the Chicago Marathon this past weekend, in honor of Evan. This is the second marathon that she has completed all because she was inspired by our boy. In a recent post, I wrote about Jenny and her dedication to our family and to Evan. From day one she has been very supportive and has done so many things to help our family and to raise awareness for Ichthyosis. We are very proud of her and wish we could have been there to cheer her on.

Jenny's FB photo captioned "Evan's got my back"

Prior to the marathon, Jenny wrote about her journey and inspiration to run on a private facebook page dedicated to Evan. Her complete story can be read on that facebook page. Below are portions of what she wrote. Her story in her own words...

"....During training for the Chicago marathon I got injured. The injuries were serious enough to actually make me stop running and schlep off to see a doctor (trust me, it takes a lot for me to ask for help). I sat there as the orthopedist did he tests and I tuned him out as he lectured me on the dangers of marathon running and strongly encouraged me to give up on training for Chicago and marathons all together, blah, blah, blabbity, blah, blah and focused on the one phrase he said at the very end, “but if you rest and go to physical therapy, you’ll be back running your stupid marathons.” He was right, the rest was what my body needed, but the timing couldn’t have been worse. I basically had to start training from scratch, in the middle of the summer with only 10 weeks to get my body into marathon shape. 

...I’m not going to lie, there were many times during my training runs that I walked and even where I just sat down and questioned why I was trying to accomplish such a lofty goal, but then I would think about Evan and his parents and a promise that I made to raise awareness and run in his honor. Evan’s condition is every single day...a training program that is so meticulous and requires the most patient, precise, loving care. ... two years later; this boy has defied all odds, surpassed all predictions and motivated so many people along the way. Evan and I share a similar quality that has connected us in a special way; we don’t know how to quit.

...The cards Evan and his family have been dealt are quite the hand, although being around them, you wouldn’t feel that way for a second. Evan’s infectious smile, heartwarming giggles, strength to live and eagerness to learn are so inspiring it kept me going strong all the way to the finish line. Joe and Diane have given up so much in their young lives to keep their son alive and more importantly, happy. This two year old boy has brought so much perspective and clarity to my life that I will forever be grateful. Because of him, I am a marathoner.

...Knowing Evan has opened doors for me to meet other kids with skin disorders like his and taught me how much appearances can be deceiving. Now, instead of questioning or judging others, I tend to wonder what their story is, what their day-to-day is like. I try to judge people less and simply smile more. I’m learning through these kids’ stories to focus less on appearances and more on being a good person, the kind of person that people want to be around, the kind of person that adds value to others' lives and hope that attitude becomes contagious among my peers. I find that I’m not afraid of correcting ignorant people and educating those that do not know any better. If more of us adopt this attitude, the world wouldn’t be such a scary place for kids like Evan to grow up in. 

...It is with great pride and vindication that I run (and COMPLETE) my second marathon in honor of such an amazing boy and family. Thank you again for providing me the platform to brag about a boy that has changed my outlook on life and made me a better person. The next time you see someone who might have a story like Evan’s, smile and thank the parents for such an amazing miracle, you will make their day and hopefully others will follow suit...
     -Jenny

Her words have touched me and make me proud to call her my friend. She is such an amazing woman. I feel incredibly honored to know that she has completed such an enormous accomplishment (for the second time) because she was inspired by my little miracle. Jenny has always had a special connection to Evan and I am very grateful for all of the support she has given to us. Thank you Jenny.

To think of how my child inspires others is an indescribable feeling. If I had to describe it, saying it's a feeling of joy and heartwarming gratefulness is an understatement. I am grateful that I have been given a child who essentially lights up others spirits. Who so far in his two years of life has been such a well behaved baby, tolerant to skin care & doctor appointments, is always in a pleasant mood and goes with the flow after all the challenges he is forced to live with. He is an amazing warrior and is not only an inspiration to others but is such an inspiration to me as well.