Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[rosieari9197]

hey everyone just found out some stuff on epcot- we are heading out for ari's wish tri[ may 8th and may 9th all threw the week! and during that time is the ending of the epcot flower festival thingy and i just read somewhere that i think the 13th they are celebrating the last theme of the festival with disney car 2 opening in the summer. and that weekend there will be tons of diff pixar charachters to meet and greet- from up and ratatouille, ect. so excited to go to epcot my kids are gonna be so excited to see tow mater in flowers! and there is something called a race around the world showcase and from what i read u get a map that shows all the stops u need to go and then when u hand it in the kids get a special prize. i hope thats true it sounds like so much fun. anyways just wanted to share that with you all.

 

[rosieari9197]

http://www.mousesteps.com/index.php?option=com_content&task=view&id=564&Itemid=37

 

[livndisney]

hey everyone just found out some stuff on epcot- we are heading out for ari's wish tri[ may 8th and may 9th all threw the week! and during that time is the ending of the epcot flower festival thingy and i just read somewhere that i think the 13th they are celebrating the last theme of the festival with disney car 2 opening in the summer. and that weekend there will be tons of diff pixar charachters to meet and greet- from up and ratatouille, ect. so excited to go to epcot my kids are gonna be so excited to see tow mater in flowers! and there is something called a race around the world showcase and from what i read u get a map that shows all the stops u need to go and then when u hand it in the kids get a special prize. i hope thats true it sounds like so much fun. anyways just wanted to share that with you all.

We did this a few weeks ago. It is not a true race, but more of a go at your own pace. I think DD liked the map better than the "prize", but she had fun. If you had not heard, there is a special tour of life size Cars going to be at DTD for the Pixar Weekend. May 13-15

 

[rosieari9197]

We did this a few weeks ago. It is not a true race, but more of a go at your own pace. I think DD liked the map better than the "prize", but she had fun. If you had not heard, there is a special tour of life size Cars going to be at DTD for the Pixar Weekend. May 13-15

COOL! ari will flip he loves cars specially towmater! we will deff check it out and we will deff post pics!

 

[livndisney]

COOL! ari will flip he loves cars specially towmater! we will deff check it out and we will deff post pics!

I will post a link to the article I saw. The Cars at DTD are actually remote control. I know we will be there LOL.

http://pixarblog.blogspot.com/2011/03/cars-2-agents-on-mission-tour.html

Preview http://disney.go.com/cars/

and there are also some free games on that site (you can design your own car).

 

[rayleechristian]

Ok, so here we go!!! This is Christian's story so let me introduce you to him first!!

This is Christian!!! Handsome booger isn't he??

Let me tell you a little about Christian to get us started. Christian was born on October 1st, 2001. My pregnancy went really well except that he was breech and had to be a c-section. This is me!

Here is Chris, my sweet hubby and awesome daddy!!

He had a breathing complication for about the first 30 minutes of his life but recovered quickly. He was our perfect baby! Sweet, bright eyed, slept through the night, nursed like a champ!!!!! He was so sweet and funny! He was always the life of the party and still is!! His infant and toddler years were great and went off without a hitch, pre school, soccer team, first girlfriends! He, He!!

This is his brother Raylee!

He was 5 when Christian was born and is now 12. Let me back up a little bit here. When Raylee was 3, he was diagnosed with duchenne muscular dystrophy. One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. The cause is an absence of dystrophin, a protein that helps keep muscle cells intact. The onset is early childhood 2-6 years. The symptoms are generalized weakness and muscle wasting first affecting the musclesof the hips, pelvic area, thighs and shoulders. Calves are often enlarged. Inheritance is X-linked recessive. DMD primarily affects boys, who inherit the disease through their mothers. Women can be carriers of DMD but usually exhibit no symptoms. The progression is that DMD eventually affects all voluntary muscles, and the heart and breathing muscles. Survival is rare beyond the early 30s.

When Christian was 3 we had him tested for muscular dystrophy. The test result came in negative. We were thrilled! As Christian got older we notice more and more the same symptoms that Raylee had. We had him tested again when he was 7 and the dna test came back in as positive for duchenne muscular dystrophy.

No one can explain it, no one has to, we just have to have faith that the big guy upstairs knows what he is doing.

Because we understand the hardships that families go through, our family started The Rileigh and Raylee Angel Ride Foundation for children with life threatening medical needs. It is a foundation started by the inspiration of two children - Rileigh and Raylee. Rileigh was born with Down syndrome, she is a friend of ours, and Raylee with Muscular Dystrophy. Their genetic conditions brought to light the hardships a family is challenged with when caring for children with special medical needs. A small group of family and friends took this awareness and turned it into the determination to establish a funding program that could help families faced with similar circumstances.

The mission of the foundation is to assist families of children, ages 18 and under, who have special medical needs. Qualifying families may receive financial assistance to help pay for the costs associated with the medical needs of these children. A family is eligible for benefits once per calendar year. Since its inception in 2001, the foundation has helped over 700 applicants and that number continues to grow each year.

A network of over 400 volunteers gathers each November to bring to life the foundation’s main fundraising event - The Angel Ride. The inaugural Angel Ride in 2002 was a leap of faith attempt to raise seed money for the foundation. It began as an afternoon motorcycle ride and picnic and has now grown into a two day event with headcounts exceeding 10,000. The motorcycle rider participation has continued to reach new levels each year with the 2008 rider attendance topping out at over 4000 strong. The motorcycle ride is followed up with concerts by major entertainment artists. To see, first hand, the community and corporate support for this event is a heartfelt experience when considering its objective – to help a child.
We will be celebrating our 10th year in November.

Now, Christian is 8 years old and full of life! He is funny, witty and sweet as can be. He loves school and makes great grades. His favorite thing to do is to play on his xbox and ds. He makes friends everywhere he goes. He loves his brother and all his animals. (more on them later!!)

When Raylee was 5, he got his MAKE A WISH. It was to go to DisneyWorld. Christian was 1 when we went so he doesn't remember much. Since then we have gone back to Disney but we haven't had as much time to spend and Disney can get expensive!

Christian has decided that he would like for his wish to be flying to DisneyWorld and swimming with the dolphins at Discovery Cove!!! He would like to stay at Animal Kingdom Lodge!!! Christian just loves Disney and animals so we think it's just right!!!

We had his meeting with the MAKE A WISH rep's last Thursday night! They were wonderful and brought him a GAMESTOP gift certificate so that he could pick out the perfect game!

He answered all of their questions. They asked him his favorite color, his favorite toy, his favorite Disney character-Finneas and Ferb!!

Christian is very excited and we can't wait to hear if his wish is granted!

Thanks for following along and we will keep you posted on all things to come!!!!!!

 

[blessedmom4]

To the Wish Tripper's Thread!
Congratulations on Christian's wish (I have a Christian as well)

Going over to check out your story!

 

[blessedmom4]

What happened to the Link you had on here before you posted all of these cute pictures and the story???

ETA: Never Mind, it is back.

 

[teresajoy]

Ok, so here we go!!! This is Christian's story so let me introduce you to him first!!

!!!!! Do you have dates yet?

 

[rayleechristian]

CHRISTIAN'S MAKE A WISH COMING TRUE!!!!!

 

[rayleechristian]

NO DATES YET!!!

 

[evsmama30]

welcome!!!! so nice to see you! what an awesome story of helping others! that is really fantastic about your program! and the boys are just as cute as they can be! looking forward to following along and the excitement of your trip!!!

 

[chelleydi77]

The girls went on an egg hunt hosted by Make-A-Wish San Diego! http://www.disboards.com/showpost.php?p=40835467&postcount=75

 

[SueM in MN]

Thanks Sue, I actually HAD read this a LONG time ago when we were first researching Lisa's MAW trip. I am hoping for a place that gives the actual G-Forces. I know each circumstance is different; however, based on working closely with her cardiologists, they have given me some guidance in this matter. Of course, if there is ANY question at all, we will skip the ride. I appreciate the time you took to post this link for me!!

I don’t think you will find any sites that will give the actual measured G forces. There are some links in that thread though that give some pretty educated estimates, so you may want to look at it again.

What happened to the Link you had on here before you posted all of these cute pictures and the story???

ETA: Never Mind, it is back.

rayleechristian posted a duplicate link, so I deleted one of them. You probably saw the one I deleted before it was gone.

Anyway, welcome rayleechristian and hope your son’s Wish trip is everything he imagines!

 

[Mom2mitokids]

Ok, so here we go!!! This is Christian's story so let me introduce you to him first!!

This is Christian!!! Handsome booger isn't he??

Let me tell you a little about Christian to get us started. Christian was born on October 1st, 2001. My pregnancy went really well except that he was breech and had to be a c-section. This is me!

Here is Chris, my sweet hubby and awesome daddy!!

He had a breathing complication for about the first 30 minutes of his life but recovered quickly. He was our perfect baby! Sweet, bright eyed, slept through the night, nursed like a champ!!!!! He was so sweet and funny! He was always the life of the party and still is!! His infant and toddler years were great and went off without a hitch, pre school, soccer team, first girlfriends! He, He!!

This is his brother Raylee!

He was 5 when Christian was born and is now 12. Let me back up a little bit here. When Raylee was 3, he was diagnosed with duchenne muscular dystrophy. One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. The cause is an absence of dystrophin, a protein that helps keep muscle cells intact. The onset is early childhood 2-6 years. The symptoms are generalized weakness and muscle wasting first affecting the musclesof the hips, pelvic area, thighs and shoulders. Calves are often enlarged. Inheritance is X-linked recessive. DMD primarily affects boys, who inherit the disease through their mothers. Women can be carriers of DMD but usually exhibit no symptoms. The progression is that DMD eventually affects all voluntary muscles, and the heart and breathing muscles. Survival is rare beyond the early 30s.

When Christian was 3 we had him tested for muscular dystrophy. The test result came in negative. We were thrilled! As Christian got older we notice more and more the same symptoms that Raylee had. We had him tested again when he was 7 and the dna test came back in as positive for duchenne muscular dystrophy.

No one can explain it, no one has to, we just have to have faith that the big guy upstairs knows what he is doing.

Because we understand the hardships that families go through, our family started The Rileigh and Raylee Angel Ride Foundation for children with life threatening medical needs. It is a foundation started by the inspiration of two children - Rileigh and Raylee. Rileigh was born with Down syndrome, she is a friend of ours, and Raylee with Muscular Dystrophy. Their genetic conditions brought to light the hardships a family is challenged with when caring for children with special medical needs. A small group of family and friends took this awareness and turned it into the determination to establish a funding program that could help families faced with similar circumstances.

The mission of the foundation is to assist families of children, ages 18 and under, who have special medical needs. Qualifying families may receive financial assistance to help pay for the costs associated with the medical needs of these children. A family is eligible for benefits once per calendar year. Since its inception in 2001, the foundation has helped over 700 applicants and that number continues to grow each year.

A network of over 400 volunteers gathers each November to bring to life the foundation’s main fundraising event - The Angel Ride. The inaugural Angel Ride in 2002 was a leap of faith attempt to raise seed money for the foundation. It began as an afternoon motorcycle ride and picnic and has now grown into a two day event with headcounts exceeding 10,000. The motorcycle rider participation has continued to reach new levels each year with the 2008 rider attendance topping out at over 4000 strong. The motorcycle ride is followed up with concerts by major entertainment artists. To see, first hand, the community and corporate support for this event is a heartfelt experience when considering its objective – to help a child.
We will be celebrating our 10th year in November.

Now, Christian is 8 years old and full of life! He is funny, witty and sweet as can be. He loves school and makes great grades. His favorite thing to do is to play on his xbox and ds. He makes friends everywhere he goes. He loves his brother and all his animals. (more on them later!!)

When Raylee was 5, he got his MAKE A WISH. It was to go to DisneyWorld. Christian was 1 when we went so he doesn't remember much. Since then we have gone back to Disney but we haven't had as much time to spend and Disney can get expensive!

Christian has decided that he would like for his wish to be flying to DisneyWorld and swimming with the dolphins at Discovery Cove!!! He would like to stay at Animal Kingdom Lodge!!! Christian just loves Disney and animals so we think it's just right!!!

We had his meeting with the MAKE A WISH rep's last Thursday night! They were wonderful and brought him a GAMESTOP gift certificate so that he could pick out the perfect game!

He answered all of their questions. They asked him his favorite color, his favorite toy, his favorite Disney character-Finneas and Ferb!!

Christian is very excited and we can't wait to hear if his wish is granted!

Thanks for following along and we will keep you posted on all things to come!!!!!!

Your boys are so handsome. My kids have Mitochondrial Disease which is classed as Muscular Dystrophy. We just got back from our second MAW trip. Both kids choosed Disney World. Did Raylee stay at GKTW? I would really consider staying there. It's a once in a lifetime chance. We stayed there with my youngest during her Wish trip and when it came too my second daughter Wish...she had to stay at GKTW. Her main wish was the Discovery Cove to swim with the Dolphins, but that was a whole different Wish and it meant not staying at GKTW. Now...we did have an Angel and she paid for us to do the Discovery Cove too. It was just amazing. I can't wait to get to know your family. I hope you hear from MAW soon.

 

[jon03015]

Congrats on the wish! Glad to see you on here and read your story.

 

[jon03015]

so sorry for my little hiatus!

I had chest pain at work yesterday morning and evidently I looked "bad" so my doc made me go to the ER...long story short, my heart is "abnormal" and threw a flag at the EKG machine - my EKG itself was FINE and they ruled it not a heart attack...but it was a long day yesterday!

They diagnosed me with pleurisy - which flippin' hurts! ANwyay...sorry for my day or so without posting!

I am sorry to hear that! I hope you feel better, can they help you with the pain. I hope so!

We just heard that we will find out if my Brother-in-Law's kidney will be accepted in the 29th. If it is we are set for Austin's transplant. If it is not the search will continue for a live donor! We are really hoping for this.

 

[blessedmom4]

I don’t think you will find any sites that will give the actual measured G forces. There are some links in that thread though that give some pretty educated estimates, so you may want to look at it again.
Thanks again Sue. I will re-read the post again when I am less tired and see if I can figure things...my brain has been slow lately and when I read it again the other night I still couldn't see what I hoped for. I am certain you are correct that the measured G forces aren't neatly written anywhere because I have searched for that info for a LONG time.
rayleechristian posted a duplicate link, so I deleted one of them. You probably saw the one I deleted before it was gone.

You are really good Sue to have done that in the two minutes when I first saw rayleechristian's post and when I typed that I couldn't see it to visit. I couldn't type that fast, much less delete that quickly!

 

[Perrinsmommy]

Hi everyone! Hope everyone is having a great Easter weekend! I have a quick question. Does anybody know what GKTW's policy on bringing support animals? Or does anybody have any experience with this? I got an email from Airtran this morning stating that she is considered a service animal and can sit on his lap on the plane (yay to that!) I just don't know about GKTW, that may be our deciding factor. We were thinking about boarding her along with our family goober dog but its starting to look expensive for both. Thanks in advance!!

 

[SueM in MN]

You are really good Sue to have done that in the two minutes when I first saw rayleechristian's post and when I typed that I couldn't see it to visit. I couldn't type that fast, much less delete that quickly!

It was just luck.

Hi everyone! Hope everyone is having a great Easter weekend! I have a quick question. Does anybody know what GKTW's policy on bringing support animals? Or does anybody have any experience with this? I got an email from Airtran this morning stating that she is considered a service animal and can sit on his lap on the plane (yay to that!) I just don't know about GKTW, that may be our deciding factor. We were thinking about boarding her along with our family goober dog but its starting to look expensive for both. Thanks in advance!!

Questions about animals are a little tricky.

Air Travel is not covered by the ADA, but by the Air Carrier Access Act, which does allow Emotional Support Dogs. Airlines can’t ask for proof that a Service Dog is needed, but are allowed to require documentation for Emotional Support Dogs (the second link details what they may require).
These are links to FAQs about the Air Carrier Act - scroll down to find the questions about Service Dogs/Emotional Support Dogs.
http://airconsumer.dot.gov/rules/FAQ_5_13_09.pdf

http://www.dlrp.org/html/topical/aircarrier/aircarrier_serviceanimals.html

Other places like hotels, amusement parks, businesses are covered under the ADA.
The ADA does not consider Emotional Support Dogs to be Service Dogs. In order to be a Service Dog, the person must be disabled and the dog must have been individually trained to do something that assists the person with their disability (very simplified). If the dog does not meet the definition of a Service Dog, it does not have to be allowed in. A Service Dog has no rights - the person with a disability has the right to use a Service Dog as an accommodation for needs related to their disability.