Jakentysmom
Mouseketeer
- Joined
- Jan 7, 2013
- Messages
- 157
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
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
Hopefully it doesn't rain, but if it does, don't let it stop you - pack disposible rain ponchos.
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!
so I really hope that we will get some news before it to make me happy!!
