hollie1974
Mouseketeer
- Joined
- Dec 13, 2010
- Messages
- 215
Hiya,
My name is Hollie and my daughter Lily has been granted a wish by MAW. The volunteers will be here this Saturday and high noon (lol) for our first meeting.
So let me tell you a little about our family. I am a stay at home mom and college student currently attending for my BA in Psychology. I was a full time student but because of Lily's illness I have had to cut back to part time but I am hoping next fall I will be able to attend at full time again. Considering I really want to get my PhD I want get this show in gear! lol
My husband is Tracy and he is a works full time right down the road from our house (which is great during this crappy ohio weather we have going on right now!) and details cars at a family/locally owned dealership.
Tracy and I have been together almost 12 years and been married for nine.
Next up is our son CJ. He is 10 yrs old and while he is not the wish kid, he has had his own issues to overcome. And he has done quite well with that! He was diagnosed with ADHD but I think he is more ADD. While he is pretty hyper at home, at school is he as quiet as a church mouse. He did have some serious focusing troubles but his focus seems to be improving with age as does his ability to settle himself down and try not bounce off the walls. In second grade his grades were c's and d's. During that year he was diagnosed with a writing disability and we put an IEP into place. Since then his grades jumped up to A's and B's and have stayed there! Very proud mama here!
And finally our wish princess Lily. Everything was perfectly normal with Lily till a month before her 3rd b-day. Despite everything being normal I was a nervous wreck with her, always paranoid that she was going to choke, fall down steps, etc, etc just that something terrible was going to happen to her. Then Dec 14 2009 (yup exactly one year ago) Lily had her first seizure. Walking into that in my precious baby girls room in the middle of the night is probably one of the scariest moments of my life.
Over the past year Lily has had 4 more seizures. 3 of the 5 seizures she has had have been status epilipticus seizure (these are seizures that don't stop without medical intervention). We are VERY, VERY lucky Lily has not suffered any kind of brain damage from her extended seizures (1 was 30 minutes, 1 was an hour and a half and the biggie was 3 and 1/2 hours!). She has bounced back from every seizure with amazing resilience. Our little girl is a fighter
So jump ahead to Oct 27 (yes I am cutting a lot out but it's a long story. If you are interested please visit Lily's blog at http://lilyfight.blogspot.com) we got the diagnosis that I thought they were crazy for even considering. But genetic testing proved it. Our daughter has a very rare genetic disorder called Canavan. Now here is why I thought they were nuts.....children with traditional Canavan are terribly disabled, they are normally diagnosed at 6 months of age cause they are not hitting their milestones. Children with traditional Canavan don't ever walk, most never talk, they go blind and deaf and very few make it passed their 10th b-day. Now here is my perfectly healthy little girl who just happens to have seizures and they are telling me that she has this horrid disease.
Well there is a new emerging diagnosis of mild Canavan, which is what Lily has. Lily may have the mildest case of Canavan ever. But there have been so few cases of the mild Canavan they can't tell us what is going to happen to her. The type of Canavan she has is so rare as far as I can find there are only 4 cases of the mild Canavan in the US and they are ALL girls ( and I have been able to speak to ALL their parents which was REALLY nice! Thank you internet!!!). Canavan itself (mild or traditional) is very rare with only about 1000 cases worldwide. Oh and I forgot to mention, Lily will be 4 on jan 14th.
While this whole thing has been hard on all of us, it has been very devastating on CJ. He worships the ground his sister walks on. In August he witnessed one of her seizures and had to call 911 while my husband gave Lily her emergency seizure meds. He had a hard time after that. He wanted to sleep with her all the time and wanted her to go to school with him! lol
He has settled down a lot and we have talked a great deal about it.
Anywho, Lily wants to go to Disney. As a matter of fact her exact words are "I want to be a beautiful princess at disney world with Drache." lol Drache is her first cousin and she is very, very close with him. I don't know if MAW will be able to included Drache in the wish but I certainly hope so.
We are working on travel dates now. It would be great is we could go the week of her b-day but I'm thinkin that is not going to be enough time for them. So not real sure about they other dates. I was thinking over spring break but my spring break from schools and CJ's are NOT the same week and I just tend to think that WDW is gonna be crazy crowded at that time. So I guess we are looking for ASAP.
I do have a couple questions maybe someone can answer for me.......
Because the vast majority of Lily's seizures have not stopped with medical intervention, I really don't want to fly. I figure if we take a train if something happens they can stop at a road crossing and pop her into an ambulance...........I think it is pretty hard to pull a plane over! lol So does MAW give you some choice or control over your transportation?
Ok so I lied, it was just one question.......lol it's late and I think my brain is shutting down so I am going to post a couple of pics in the next message and go to bed.
Hollie
My name is Hollie and my daughter Lily has been granted a wish by MAW. The volunteers will be here this Saturday and high noon (lol) for our first meeting.
So let me tell you a little about our family. I am a stay at home mom and college student currently attending for my BA in Psychology. I was a full time student but because of Lily's illness I have had to cut back to part time but I am hoping next fall I will be able to attend at full time again. Considering I really want to get my PhD I want get this show in gear! lol
My husband is Tracy and he is a works full time right down the road from our house (which is great during this crappy ohio weather we have going on right now!) and details cars at a family/locally owned dealership.
Tracy and I have been together almost 12 years and been married for nine.
Next up is our son CJ. He is 10 yrs old and while he is not the wish kid, he has had his own issues to overcome. And he has done quite well with that! He was diagnosed with ADHD but I think he is more ADD. While he is pretty hyper at home, at school is he as quiet as a church mouse. He did have some serious focusing troubles but his focus seems to be improving with age as does his ability to settle himself down and try not bounce off the walls. In second grade his grades were c's and d's. During that year he was diagnosed with a writing disability and we put an IEP into place. Since then his grades jumped up to A's and B's and have stayed there! Very proud mama here!
And finally our wish princess Lily. Everything was perfectly normal with Lily till a month before her 3rd b-day. Despite everything being normal I was a nervous wreck with her, always paranoid that she was going to choke, fall down steps, etc, etc just that something terrible was going to happen to her. Then Dec 14 2009 (yup exactly one year ago) Lily had her first seizure. Walking into that in my precious baby girls room in the middle of the night is probably one of the scariest moments of my life.
Over the past year Lily has had 4 more seizures. 3 of the 5 seizures she has had have been status epilipticus seizure (these are seizures that don't stop without medical intervention). We are VERY, VERY lucky Lily has not suffered any kind of brain damage from her extended seizures (1 was 30 minutes, 1 was an hour and a half and the biggie was 3 and 1/2 hours!). She has bounced back from every seizure with amazing resilience. Our little girl is a fighter
So jump ahead to Oct 27 (yes I am cutting a lot out but it's a long story. If you are interested please visit Lily's blog at http://lilyfight.blogspot.com) we got the diagnosis that I thought they were crazy for even considering. But genetic testing proved it. Our daughter has a very rare genetic disorder called Canavan. Now here is why I thought they were nuts.....children with traditional Canavan are terribly disabled, they are normally diagnosed at 6 months of age cause they are not hitting their milestones. Children with traditional Canavan don't ever walk, most never talk, they go blind and deaf and very few make it passed their 10th b-day. Now here is my perfectly healthy little girl who just happens to have seizures and they are telling me that she has this horrid disease.
Well there is a new emerging diagnosis of mild Canavan, which is what Lily has. Lily may have the mildest case of Canavan ever. But there have been so few cases of the mild Canavan they can't tell us what is going to happen to her. The type of Canavan she has is so rare as far as I can find there are only 4 cases of the mild Canavan in the US and they are ALL girls ( and I have been able to speak to ALL their parents which was REALLY nice! Thank you internet!!!). Canavan itself (mild or traditional) is very rare with only about 1000 cases worldwide. Oh and I forgot to mention, Lily will be 4 on jan 14th.
While this whole thing has been hard on all of us, it has been very devastating on CJ. He worships the ground his sister walks on. In August he witnessed one of her seizures and had to call 911 while my husband gave Lily her emergency seizure meds. He had a hard time after that. He wanted to sleep with her all the time and wanted her to go to school with him! lol
He has settled down a lot and we have talked a great deal about it.
Anywho, Lily wants to go to Disney. As a matter of fact her exact words are "I want to be a beautiful princess at disney world with Drache." lol Drache is her first cousin and she is very, very close with him. I don't know if MAW will be able to included Drache in the wish but I certainly hope so.
We are working on travel dates now. It would be great is we could go the week of her b-day but I'm thinkin that is not going to be enough time for them. So not real sure about they other dates. I was thinking over spring break but my spring break from schools and CJ's are NOT the same week and I just tend to think that WDW is gonna be crazy crowded at that time. So I guess we are looking for ASAP.
I do have a couple questions maybe someone can answer for me.......
Because the vast majority of Lily's seizures have not stopped with medical intervention, I really don't want to fly. I figure if we take a train if something happens they can stop at a road crossing and pop her into an ambulance...........I think it is pretty hard to pull a plane over! lol So does MAW give you some choice or control over your transportation?
Ok so I lied, it was just one question.......lol it's late and I think my brain is shutting down so I am going to post a couple of pics in the next message and go to bed.
Hollie
Hollie. You have a beautiful family and Lily is just adorable. I do know that MAW has gotten families a rental car before due to some families needing to drive and I do believe a few families have taken a train. I am not sure if there needs to be a medical form from Lily's doctor for that or not, every chapter is different. 
Hugs to you and your little girl.
(of the lagoon) that had hammock and lots and lots of sand. It was beautiful, but I had already decided that I was NOT going on the beach at 5am with no one around. The day before we had seen some good sized alligators and snapping turtles hanging out in the water. I was NOT looking to be breakfast at Disney!! 
That and a bird pooped on my shoulder 
at MK! lol They told me that it was good luck! 
Maybe they were right!
