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Old 01-07-2013, 12:10 AM   #1
Jakentysmom
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Jacob's MAW trip to WDW!! April 20-27

Hi everyone!!! This is my first time on here so I will do a little intro. I can not wait to be able to "meet" everyone and learn from all of you wonderful people!! I know that there is so much to learn before we go on our MAW trip and I have a feeling I will have lots of late nights looking at this website because of the massive amount of great info that is here. Well here is our intro!

My name is Britney. I am 30 and live with my husband Tom, 32, my son Jacob, 10 and my youngest son Tyler, 8

When Jacob was born he was a very good baby. Well that is until he was about 2 months old and got colic really bad. He would scream and scream for hours at night. Finally around 7 months he grew out of it and became a very good and quiet baby. When he got older I noticed he was late in talking but didnt think much of it. He was also much more hyper than all the other little kids and was never interested in playing with other kids. When he was 3 we were told to take him to get him checked out because his pre school teacher thought he had ADHD. So we took him to get evaluated and they came back saying that he had autism!! He did not start talking until he was almost 4!!

Fast forward to when he was 7, I took him to the allergist because he kept saying that his stomach hurt. So our ped told us to take him to get tested for allergies. When we saw the doc he said that Jacob needed to see a GI before he would see us about allergy problems because of the nature of the belly aches. When we went to see GI they told us that he was just constipated and to do a little clean out at home and we should be fine. Well we were not fine! The next day we had to be hospitalized for a clean out because the one at home did nothing to him and when they did an xray they saw that his entire bowels were jam packed full of poop. So after we got released a few days later the same thing happened again. And 7 months later we were back in the hospital. Now he is 10 and he has had 10 hospital visits. 4 of them being in the last 8 months!

When Jacob was 3 he had surgery on his eyes. They were very droopy and he could not see out of them. So they had to do surgery to lift them up so that he could see again. Well 6 years later they started to droop again. So we went back to the doc and this time he was telling us that it is not normal for this to happen again. And something else must be going on. Little did he know, we were already seeing a doc for some of those issues. Jacob has very low muscle tone. And some other issues that we have been worried about so our ped sent us to a neurologist. While we saw him he said that it seemed like Jacob was a text book case of having Mitochondrial Disease... specifically Kearns-Sayre Syndrome. Well that eye doc that we saw, said the exact same thing to us!!! It was crazy because the eye doc had no idea what the neuro said about him having KSS. After lots of testing it was proved that he does in deed have KSS. It was a blow to us. It was great because we FINALLY had an answer to all of his medical problems. However it was horrible because there is NO cure. They actually gave him a life span of 10-20 more years! This is horrible to hear and its not something you want to hear from anyone. Just in the past few months, Jacob has been going downhill. He is so weak and his muscles get so tired that he is in a wheel chair every time we leave the house. His autism is no longer the real issue anymore. This mito has taken over his life!!

So we decided to reach out to MAW before he got worse so that he could enjoy his trip and have a good time and we could actually go on a vacation and make some great memories!! I am so excited to be able to share some of these memories with you all.

Britney

Last edited by Jakentysmom; 03-15-2013 at 10:52 PM.
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Old 01-07-2013, 12:16 AM   #2
Jakentysmom
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I forgot to add that we got a call this morning saying that he was accepted. Now we just wait for our wish granters to call!!!

Here is a few pictures of my angel! This was right before his last surgery on his eyes.

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Old 01-07-2013, 12:36 AM   #3
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So glad that Jacob is going to get a Wish! I can't wait to hear exactly what he wishes for! Do you have a time frame in mind yet of when you want to go? We are still waiting for dates but it will be the end of May beginning of June. Looking forward to hearing all about your planning!

Jackie
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Old 01-07-2013, 06:59 AM   #4
Jakentysmom
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I am hoping that we will go in April or May. Jacob has a heat intolerance and so I would hate to go in the middle of summer. However, we live in Arizona, so if its hot...we are pretty used to it. Just not the humidity and rain. I am crossing my fingers and toes and everything else that it does not rain the whole time we are there!! That is my one big worry. If I had a choice on dates it would be may 4-10

Britney
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Old 01-07-2013, 03:26 PM   #5
angel's momma
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Sorry Jacob, and your family, has been through so much. So glad that he is getting his wish. Hope you get the dates that you want. We went in May once, and the weather was perfect. Hopefully it doesn't rain, but if it does, don't let it stop you - pack disposible rain ponchos.
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Old 01-10-2013, 03:15 PM   #6
Jakentysmom
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Thanks
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Old 01-10-2013, 06:02 PM   #7
NEmel
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Welcome!! Sorry for everything Jacob and your family have been through. So glad he is being granted a wish! There are some wonderful people and great ideas on the board. The good thing about FL is it usually only rains for a short time and then its gone! Can't wait to hear more about Jacob's wish!
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Old 01-10-2013, 08:53 PM   #8
Jakentysmom
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Melissa...thanks, thats good to know about the rain. coming from Az, I am NOT used to the rain. Soo hopefully we plan things right. I will make sure to have ponchos with us.
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Old 01-15-2013, 07:55 PM   #9
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Joinin in! Can't wait to read more
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Old 01-15-2013, 10:49 PM   #10
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I am following along too!
Hoping for more pics...hint hint...


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Old 01-17-2013, 03:48 PM   #11
Jakentysmom
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YAY for people following!!!

No new news right now. Still waiting on our wish granter to call.

However, Jacob will be going in for a surgery to place a gtube in 2 weeks so I really hope that we will get some news before it to make me happy!!
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Old 01-17-2013, 03:58 PM   #12
Jakentysmom
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Quote:
Originally Posted by blessedmom4 View Post
I am following along too!
Hoping for more pics...hint hint...


Ok, here are a few pics. This is one of him at one of our many hospital visits



Me and Tyler



The boys together

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Old 01-17-2013, 04:03 PM   #13
2012bella13
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My DD has Evans Syndrome, We went to Disney World for her Make A Wish Trip in May 2011, It was beautiful weather except it was 96 degrees & she did not like staying long at the parks. We spent most of our time at Give Kids The World at the pool.
Some advice I would give you is to do as much research as you can, & look at crowd calendars to pick your park days.
I did not have a way to research anything at the time of our trip but I have learned alot since then, planning a return trip for her this yr.
Let your MAW volunteer know any special things that you son might want to do & I hope you get to stay in the village, it is an awesome place with awesome people.

God Bless!
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Old 01-17-2013, 04:13 PM   #14
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Following along....
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Old 01-17-2013, 05:47 PM   #15
Jakentysmom
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Quote:
Originally Posted by 2012bella13 View Post
My DD has Evans Syndrome, We went to Disney World for her Make A Wish Trip in May 2011, It was beautiful weather except it was 96 degrees & she did not like staying long at the parks. We spent most of our time at Give Kids The World at the pool.
Some advice I would give you is to do as much research as you can, & look at crowd calendars to pick your park days.
I did not have a way to research anything at the time of our trip but I have learned alot since then, planning a return trip for her this yr.
Let your MAW volunteer know any special things that you son might want to do & I hope you get to stay in the village, it is an awesome place with awesome people.

God Bless!
Thanks for your input! I kinda like going during the summer so we can do the pools and water parks and hopefully the beach!! I know we wont have a lot of time for those but it would be nice to make some time. Since with Mitochondrial Disease, kids get fatigued very easy, so we are planning on spending lots of time at the village....that is, if we get to stay there. Was it really humid too? Did it rain a lot for you guys?

Wiigirl....thanks
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