Letter from Dad

Jacob's dad, Tom, wrote this on his facebook a few months ago.  So I thought I would put it on here so we dont forget the amazing words written by Tom.  He says it all perfectly!

I guess I will put an update on Jacob. I hate doing this but figured most of you would care to know. Jacob has something called Mitochondrial Disease. He was diagnosed with it a few months ago. Inside that disease is called Kearns Sayer syndrome. What that is in short is basically his muscles will give out and it will take his life. Jake is not supposed to live past 30. He is 10 now. That being said, far too many people tell us Jake is fine. Or Jake will be fine. I wish people had to live with him. They dont see him literally crash and fall onto the floor because a muscle gives out. All they see is a very happy kid who looks normal on the outside. He does not let his disease get in the way of things he wants to do. However his parents tend to shy away from some things like running a lot. He has to conserve energy.

I write this to let you know of Jacob. I am not one at all to do something like this but Britney had asked me too some time ago. I told her I would. Today Jacob has a small surgery. He is having a "G tube" put in so when he goes in for his clean outs every couple months they can plug the tube right into him, literally.

However for some good news!!!

Make a wish is a great program. For Jacob we decided to sign up. You basically have to have a life threatening thing to get accepted, so it is bitter sweet. Well, a couple weeks ago they called us to tell us we had been accepted. And Jake will have one wish they will grant. A couple weeks later (last tuesday) they came to our house to get Jakes wish. He is going to be going to Orlando, Florida. Oh yeah, DISNEY WORLD and all the other attractions. He wants to go met phillip phillips and also the blue man group. We will see if that happens. So in the next month or so we will be heading to Orlando for a week. This is Jakes time to shine. Anything he wants there, basically he gets.

We are so proud and happy to have Jacob in our lives. We wouldnt trade him for anything. And dont feel bad for us. This is the only life we know. This is normal. And please, don't try to diagnose our son. He has been diagnosed many times. Sometimes the picture looks good from a distance but when you get close you find out its really not. Jacob has a big heart, and loves people and being the center of attention. If you have not gotten to know him, I would say you are really missing out on a special boy. My special boy. Our special boy. We will have fun with him until his time comes. We will prepare him for what ever is next. All we ask is that if you come in contact with Jacob, please love him as we do and most of all, dont ask him about his health. He hates thinking about all the hospital visits.

And with this I say off to the hospital I go to see my boy work his magic once again and come out a champion.

Tom