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Saturday, March 3, 2012

This fall...

Dear family and friends,

Thank you all so much to those that have already signed up for the Mito What? 5k. Your support these past 5 years through this mito journey have meant so very much to me. I always treasure your kind words and prayers. This race means so much to me. It gives me hope that a cure or treatment will be found one day when I see so many people coming together on that day.

When Jackson was fist diagnosed with Leigh's John and I were absolutely devestated. We had no idea what was ahead of us.The day in November that Jack was diagnosed with Leigh's,  I remember telling John that I haven't even planned his first birthday party and now the doctors are telling me I need to plan his funeral. It was a heartbreaking time. I am grateful to God for every smile Jackson has because there was a time when Jack didn't smile. I am grateful to God for every moment I have with Jack because I never know when Jack's life will end. Even though I am so grateful for Jack's life there is the reality that Jack has never talked, walked or even played with a toy. There are so many milestones of childhood that Jackson will never experience. It just completely breaks my heart. This fall Jack won't be going to Kindergarten. I will never hear Jackson recite his ABC's,123's or his phone number and address. Jackson won't be star of the week and make a poster with photos.  I will not pack a snacks and send milk money for him. This fall I will not be buying big crayons, fat pencils or even a nap mat. He won't be picking out a new lunch box and backpack to go to school. I always enjoyed watching Elizabeth and Wesley struggle with this decision. I won't have that pleasure this fall. I won't even get to cry when I leave him on his first day of Kindergaten like I did with Elizabeth and Wesley. Instead, Jack will be at home having his diaper changed, enduring physical therapy sessions so his muscles won't atrophy, be on continuos oxygen to keep his O2 levels up, have formula poured through a tube into his stomach to keep him nourished. Jackson will have to be continuously repositoned to avoid skin breakdown. He will have his temperature checked rectally every hour to make sure he temp is normal. If his temp is not normal and he is overheated he will have to be cooled down with icepacks and cool rags. His brain can not regulate his body temp. He will be lifted in/out of his bed, wheelchair, bath chair, stander and carseat. Included in Jackson's physical therapy sessions (which are twice a day) are stretching sessions for his arms, legs, hips and rib cage. He gets strapped into a stander and stands for 45 min to help his internal organs, leg bones, pelvis and spine. Jackson will endure 25 minute or longer chest percussion treatments 4 times a day, just to keep his lungs pneumonia free. He will be going to the neurologist, cardiologist, pulmonologist, GI, immunologist,allergist, kidney specialist,  physical therapist, occupational therapist, speech therapist appointments this fall and as long as he lives. Jackson will be hospitalized and will have IV's when his temp is 101 or greater. He will be pricked for bloodwork this fall and the rest of his life. This fall Jackson will be learning to communicate with a switch. This fall I won't be writing notes to Jackson's teacher. I will be writing letters to insurance companies begging for them to cover the cost of Jackson's needs.

So with all that said I am begging for your participation in the Mito What 5k. You don't have to run (I never run anywhere)! Just register and get a shirt. You can raise awareness just by wearing mito fashion. I am begging from the bottom of my heart.