Yep....it makes me MADD

Well dear readers it has been a long couple weeks.
      Just last week I was in the hospital for stomach pains and other issues. All the blood work was coming back fine and the CAT scan look okay as well. The doctors were so confused as to why I was feeling this way. I just kept thinking that it was because I needed to get the IVIG but what I didn't know is that just a few extra vitamins would make such a HUGE difference.
      While I was in the hospital I had it confirmed that I definitely have more then one thing going on with me. Not only do I have JM but I also have a rare genetics disease call MADD....funny right because that's what it makes me LOL! The disease is called a Multiple Acly-coa dehydrogenase deficiency. Try saying that three times fast.Multiple acyl-CoA dehydrogenase deficiency is a rare genetic disease that involves the fatty acid oxidation. It is due to the deficiency of one of the two electron transporters: electron transfer flavoprotein or electron transfer flavoprotein ubiquinone oxydoreductase. These two transporters do not have enough energy to break down the fats that I intake. This causes the fat to store in places it should not be stored in. Usually the symptoms begin more often in childhood or in young adulthood with a multisystemic disease which can present itself in muscular weakness. This disease will be one that I will have to deal with my whole life. I have been put on large doses of b-2 which is supposed to help my body break down the fats that are not being stored in the right place and I also have to stay on a special low fat, high carb diet.

      But enough about all the scientific junk lets just focus on the positive things! Since I have been put on such high doses of the vitamins I feel so much better. I can feel myself getting stronger everyday. I can feel my legs being able to go just a little further. It feels amazing to be getting better. From here on out its only up!  I have realized how lucky I have been throughout this whole journey. To have my family, friends and all of my dedicated readers here to support me in each step that I take.
     Well that is it for now. I did therapy today and it is time to watch a GREAT movie with my boy Connor, my little sis Emily, and my Mimi. Thank you all once again for reading my blogs. I love seeing that there are people from all over the world reading MY words! Seeing the hope that I have and realizing that there is more to a person then their condition or illness. You can do anything that you want to do as long as you have faith in YOU!
Love always,
Callie

If you would like to learn more about the Cure JM foundation please visit  www.curejm.org