This is Mito through Jakes eyes!

I watched a video today about a girl who made a video for her high school project about her brother that has mitochondrial disease (mito) and it made me teary, of course.  But it was such a great example as to what mito really is!  So I thought I would do my own little version of that.  This is mito through Jakes eyes.  I have so many more pictures I could of put on here, but I think this is good enough.  This kid has been through SO MUCH!  I cant even begin to say how much getting this service dog will help him.  I hope by looking at some of what Jacob has to deal with on an every day basis, you will understand...just a little bit..what it is like to live with this horrible disease!  And what it is like for us, as his family, to watch him suffer and not have a lot to help him with.  This is a big reason why we need a service dog for Jacob.  This dog will help in SO MANY WAYS!  This will give Jacob the chance to have a "normal" life and not have to rely on mom and dad 24/7.  This will give Jacob the friend that he so desperately craves!  This will give mom and dad the piece of mind that he is being watched over.  It will help us sleep better.  It will help HIM sleep better.  When we go to the hospital, it will help Jacob not get so anxious.  When we are in places with a lot of people where Jacob normally would have meltdowns, she will help him be calm.  All of this is so important to us.  Getting this sweet dog means so much.  More than anyone knows.

And this is mito through Jakes eyes...

This is when we first started to notice things...his droopy eyelids!  This is right before his very first surgery.

His first hospital visit for a clean out

Exhaustion because he ran out of energy

Getting his gtube so he can stay hydrated and not get so dehydrated every day

                                                                     More hospital visits!

The concern in his little brothers eyes

Autism!  And having meltdowns!

Things being too loud

                                       His horrible constipation and distended belly

More surgery

the MANY ER visits

The MANY tests and xrays

Getting sick when his body just doesnt have enough energy to run

Being wheelchair bound because he just cant walk anymore

Silent Auction

Hi everyone!

So, the wonderful people at Buffalo Wild Wings said they would like to help us raise some money for Jacob's service dog.  So they have offered to house a silent auction for us.  We are huge customers of BWW because they support Ohio State Football and Tom (Jakes dad) is a HUGE fan, and so we go and watch the games there, frequently.  So we are excited to be able to do this with BWW.

So here are the details.  It will be on Thursday, August 8th from 1 pm until 8 pm.  We will have tables set up with all of the donations that you can bid on.  We will have you register with your name and phone number, and then you will get a number.  You will then be able to bid on anything you would like.  You can come and go as you please through out that 7 hours.  Then at the end, we will call which numbers win and then you will be able to purchase the item through paypal, or through credit card.  We will have it set up where you can pay by credit card there at the restaurant.

So right now we are looking for people who will donate things for the auction.  It can be anything from goods or services that you or your company has, gift cards, autographed items, big ticket items, a gift basket of different items, or anything you think someone would like to buy!

I will be putting up teasers on the blog for people to get a little glimps of what will be going up for auction.  I already have a few things and I am so excited for what we have and what we will be getting!  So please make sure to keep checking back for the new items that will be posted.

And as always, if you would like to make a donation to Jacob getting his service dog, you can do so by clicking this button to go straight to paypal.  Thank you for all your love and support.
 

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

Day 7- Time to head home!

We woke up around 7 and decided to pack up the car and check out.  We had to check out at 11 but our plane did not leave until 445.  So we had no idea what we were going to do between then.  I still was not feeling good at all.  In fact, this was the worst day for me.  So I just wanted to do nothing haha.  But we ended up going to the outlet mall that was close by.  We went and did some shopping and ate lunch there and then decided we were bored so we just thought we would go to the airport.  We got there around 130 haha.  We were there before the plane before us came to unload.  We were shocked to see that there were 4 other Make a Wish families on our flight home! We had no idea that there were so many there from Arizona.  But it was pretty cool to see them and see how much fun they had.  Finally our plane came and we were the first ones to board again.  Jacob and I sat together and across to the other set of seats, Tom and Tyler were sitting.  The lady that was sitting with us was not a nice lady.  She kept making noises and moving around when Jake would move or talk.  I am sure she was expecting a quiet ride....but with Jake nothing is quiet.  She chose to sit next to us, so I dont feel bad for her at all.  Towards the end of the flight she got up and moved to the back of the plane.  So it was nice we got the row to ourselves haha.  Jake went pee on the flight and then about 10 min later he said he had to pee again.  And by the time he got up and walked to the bathroom, he had peed his pants =(  He was pretty upset about it.  And then wehn we were landing Jakes ears started to hurt so bad.  His ears were clogged and no matter what we tried to do, it wouldnt unclog.  And then He just started screaming and crying and couldnt stop! I felt so bad for him.  I just wanted to hurry and land so that he would feel better.  But it didnt feel better.  So I ended up taking him to the doc the next day...showed he had an ear infection!  That explains everything.  So all in all, the flight was....interesting.

So when we got to the airport we went to get our luggage and no one could find where they were putting our luggage.  They said that it was on #5 and so we all walked over there and it was not our luggage.  So then we heard it was at a different one.  So we all raced to that one...and again, not the right one.  We had thought they lost our luggage until one person said I see it over here.  So we all went to that one and sure enough, it was the right one.  But it had the wrong destination on it.  So we got our luggage and then it was time to find our ride home.  Tom called the guy and was talking to him when a lady with a make a wish shirt came up to me and said that she was supposed to take us home.  I guess it was prom and so our ride was busy with prom and so we had to get another company to take us home.  So we went with her and waited for our ride.  We had to wait like 25 min until they came but when he did, we all felt great.  It was finally time to go home!!

We are so grateful for the amazing experiences we were able to have on this trip.  It was beyond our wildest dreams and I am so glad we were able to share these experiences with each other and make such great memories.  We had a wonderful time but we were so happy to be home!  We sure do miss Florida and all the fun that it has there.  And hopefully we will be able to go back and visit again soon.

I just wanted to thank everyone who has supported us through this whole Make a Wish journey.  We have so many great supporters and friends and I will always be grateful for you all.

Day 6: Animal Kindgdom and Hollywood Studios

The night before we were all feeling pretty sick.  Tom was the worst and I had told him that if he didnt feel better in the morning, he needed to stay back at the hotel.  I didnt want him walking around being sick because I didnt want him to get worse.  However, we had one big problem.  We had to check out of our Animal Kingdom Lodge hotel and check into our new hotel at Port Orleans: French Quarter.  We had to check out of AK at 11 and we couldnt check into our new one until 3!  Since we were all feeling sick I didnt know how long we would last at the parks.

We woke up early because we had a breakfast reservation at Tusker House to eat with the safari characters.  Tom said he was feeling better, but I was still feeling really yucky.  It seemed like both boys were doing better too.  So off to breakfast we go.  We got there and had to walk and stand and wait in the heat.  It was torture!  When we finally got in there, we had to take pictures with donald first.  It was so much fun.  He was so funny and the boys loved it.  We got the printed picture of that picture too.  We sat down and got our food and one by one all the chars came to our table.  There was goofy, mikey, donald, and daisy.  I was expecting minnie to be there, but I guess she doesnt go to that one.  After breakfast we went to the safari since that is the whole reason to go to Animal Kingdom.  It was fun...took about 30 min to get through the whole thing.  At one point, I was about 10 feet from a giraffe!  It was amazing.  All the animals and the land was just breath taking.  It was absolutely beautiful!   We walked around for a bit trying to find more characters to sign the books but we couldnt find any so we just left and went to Hollywood Studios. 

Now this is the park we were looking forward to the most.  Mostly for Tyler!  He was SO excited to meet Lightning Mcqueen and Mater.  Those are his FAVORITE characters and so he really wanted to meet them and be able to talk to them.  We first saw Marilyn Monroe and betty boop.  They were both so fun and stayed in such good character.  We did a few rides, but not much.  The most we did there was see all the characters and just walk around.  Since I wasnt feeling good, I was not in the mood to do much.  We went on Star Tours and that was the best ride of the day!  The boys absolutely LOVED it.  They had so much fun on it.  We finally made it over to see Lightning McQueen and Tyler could not stand it.  He ran right up there and just stood there waiting for them to talk to him.  When they didnt, he was so disappointed.   He really wanted to talk to them about things haha.  But he loved it and said that was the best part of the trip.  We got some good pictures of him meeting lightning McQueen and mater and I am glad he was able to meet his hero haha.  We asked if he was disappointed that he didnt get to talk he said yes.  But he said that he must of really liked him because he revved his engine 2 times for him...haha.  

We left there around lunch time and decided to go to house of blues one more time.  We loved their food and being at downtown disney is always fun.  So we headed there knowing we had a few more hours left until we could check into our other hotel.  So we took our time eating lunch and then we just decided to go and see if we could check in early.  We got there around 2 and they said that our room was ready so we were able to check in.  The hotel was def not as nice as the one we just stayed in, but it worked out for us.  We just hung out in the hotel resting from the past week.  Jacob was having a really rough time.  He was very angry and then felt really sick afterwards.  We just think the 7 days was much to long for him.  So he started acting out because thats the only way he knows to show his emotions.  We ate dinner there at the hotel and then went to bed shortly after.  We tried to go to bed early since we had been up so late every night before and we knew we were flying home the next day and had a lot to do.