Alex and Maddy

Alex and Maddy

Monday, September 17, 2012

A Hard Week


This is a week that always sneaks up on me and leaves me unsure of what to say! Six years ago I had never heard of Mitochondrial Disease. I could not have told you what Mitochondria were. And yet, Mito has become the central driving force in our life. When God blessed us with Alex 8 years ago, we could not have pictured this life. No one would choose this life and yet it is our life and we have found joy in our craziness. Our days are filled with feeding tubes, with central lines, with shots and infusions and meds. We spend our days in doctors appointments and therapy and often in the hospital. Our lives are filled with so much more. I get to spend my days surrounded by my sweet boy. I live with a child who always has a smile on his face. Whose laughter can put a smile on my face. A child whose bravery and courage are inspirational. I get to spend my days with a boy who is kind and caring.
I have seen firsthand in the last year what research and advancements can mean to these kids. One year ago Alex was accepted into the study at Stanford University. The results have been phenomenal. The new medication coupled with starting immune replacement therapy and closing a hole in his heart have transpired into the best year healthwise that Alex has seen since he was a baby. Research can change the outcome for these kids. A year ago, I could not think about the future. Now I can look into the future and hope!



 
 
 
As we get back into "real life". We are jumping back into school and cub scouts. Over the past few years many of you have supported Alex in his Popcorn sales for cub scouts. Both of his first two years, he has been top salesman for his pack (about 80 kids). He has once again set the goal to be top salesman. If you would like to support Alex in reaching his goal, please go to http://www.trails-end.com/shop/ In the top right hand corner, it says you are supporting no one. If you click on change, you can enter Alex B and our zip code (76244) and the sales will go to his account.
 
Thank you for the love you continue to show to our family. We ask that you continue to pray for Alex's help as well as for Bruce to find the "right" job.
Ali

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