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Tuesday, April 3, 2012

Thank you!!!!

Can I be honest with yall? I was extremely worried this year that the race would not be successful. I was worried because of severl reasons. First, the economy. People are out of work or their hours have been cut back and gas is almost $4 a gallon. (OMG!!!) Money is tight all the way around. Second, I was worried because I thought people have heard about mito, Jack's struggles and it's old news.  I found out Saturday that I was wrong to worry and think those things. You guys ROCK!!! Yall really came together for Jack and I am truly grateful! The last total I got was $14, 600. Since this race started wehave been able to give the UMDF $60,000. Can you believe it!!! It gives me so much hope that a cure/treatment will be available one day!!! Sometimes, as Jack's mom, I feel so powerless aginst mitochondrial disease. There is nothing I can do to make Jack better. There is not any over the counter, prescription, alternative medicine I can buy to make him better. I am powerless to make his seizures stop. I am powerless to stop Leigh's. If there was a cure I would have found it by now. I have had endless internet sessions hunting for some obscure, rare mitochondrial disease cure. Holding this race  makes me feel powerful for one day. Race day is a day that I feel that a treatment is a possibility. A BIG Thank to everyone that donated and participated in Jack's race. It was an unbelievable success again!

You may be wondering why did it take Emily so long to tell us about the totals and race day. Jack had a VERY EXTRA Busy race weekend. Friday night he was at McAlister's for packet pick up, Saturday he got up early to go to his race. After the race Jack went straight to bed for rest. Sunday, Jack woke up happy and full of energy so he went to church. Sunday night, Jack had a one of his seizures in his sleep where he stops breathing. He was very tired on Monday. He slept most of the day on Monday. He was still tired on Tuesday but slept less. He rested the reat of the week with Ms. Charlotte and I watching closely. He worries me so very much when he has grand seizures. Worrying about Jack is worry like no other.  It is a worry from deep in my soul. The constant worry rarely leaves me alone.

I took Jack to his Memphis cardiologist today. It was suggested to me that we keep one here in Memphis well infomed and on Jack's team. That sounded like good advice to me so I made an apt. He said he would be happy to work with Dr. Moulik in Houston. Jack's heart is doing fine. Jack had a full cardio work up in Jan. He said he would review the doctor notes and test results from Houston. I told him I wanted to stay on top of all things cardio with Jack. Mitochondrial disease is sneaky. He agreed. He wants to see Jack back in Oct. for another full cardio work up. It may end up saving us an apt time in Houston. We'll see...