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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Make-A-Wish http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1344262249 Message started by Erinmom2 on Aug 6th, 2012 at 10:10am |
Title: Make-A-Wish Post by Erinmom2 on Aug 6th, 2012 at 10:10am
Just thought I would share...My son was nominated for a Make a wish trip because of his Moyamoya diagnosis. In October we are heading to Disney to spend a week visiting the parks! Malachi loves animals so his wish was to going to animal kingdom and go on a safari. While we are there we get to go to all the Disney parks and sea world! We can't wait! It will be so nice to have a week free of doctor appointments and therapy where he can simply be a kid!
If you have a child between the ages of 3 and 18, with a life threatening illness (like Moyamoya) they may be eligible as well. While Malachi was refer to Make a Wish by a nurse, a parent can refer their own child as well! |
Title: Re: Make-A-Wish Post by mg12061 on Aug 7th, 2012 at 1:58pm
That's awesome!!! You guys will have the best time of your life! Kathleen got a trip to Disney because of the moyamoya also. We stayed at a place called Give Kids The World. It was the most amazing place ever. We had our own little "cottage" with a full Kitchen washer and dryer. The "village" had so many neat things to do that we couldn't wait to get back in the evening and swim and play and EAT. Have they asked you where you want to stay?
http://www.gktw.org/ This is a link to their website. We were given a rental van and the parks were just minutes away very easy to get to from the village. We even had a cousin from Florida come and visit for the day. Mary Grace |
Title: Re: Make-A-Wish Post by momkaren on Aug 7th, 2012 at 11:02pm
My son Christopher was just granted a wish also! We will be going to the Beaches Resort that has the Sesame Street characters in Turks and Caicos during Thanksgiving week!
I am sure Malachi and your family will have a fantastic time in Disney! |
Title: Re: Make-A-Wish Post by Erinmom2 on Aug 9th, 2012 at 11:06am
We are also staying at Give Kids the World! He is so excited and so are we!
Have fun on your trip! |
Title: Re: Make-A-Wish Post by mg12061 on Aug 16th, 2012 at 7:21am
You will love staying at Give Kids The World! They make you feel very special. The cottages are so roomy and have everything you need. They have some charectors from Disney come to the village. At the parks our family got on the rides right away and could even stay on and ride as many times as we wanted. Kathleen's favorite ride was the Winnie The Pooh ride in Magic Kingdom she rode it 6 times.
Mary Grace |
Title: Re: Make-A-Wish Post by mom2nfautismaspergers+other on Sep 19th, 2012 at 9:00am
My daughter had her Make a wish trip in Aug.. and we too stayed at give kids the world.. it is an amazing place.. we were able to go to Disney (all 4 parks) sea world, and Universtal.... My daughter has NF1, ADHD, Aspergers, MOYAMOYA, Restrictive Lung Disease, High blood pressure, Spastic Deplisa Cp..
We had a very awesome time.. |
Title: Re: Make-A-Wish Post by MomOfHaleigh on Feb 7th, 2013 at 9:48pm
My daughter, Haleigh will have her wish granted this May by going on the Disney Cruise. It has only been 7 months since she was diagnosed and I still can't believe how far we have come. From day one asking the doctor, "WTH did you just say, she's only 6!!!" to flying to Boston for neurosurgery, and now developing our "new normal" and turning this all into a postive working on raising the awareness of Moyamoya. I hope you all enjoyed your trips to Disney and the Beach Resort. Haleigh is over-the-moon excited about the cruise!!!!
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Title: Re: Make-A-Wish Post by momkaren on Feb 19th, 2013 at 9:50pm
That is awesome! I know you guys will have a fantastic time!!
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Title: GAC (Guest Assistance Card) at Disney World? Post by Steve on Jul 12th, 2013 at 6:10pm
My 8 year old daughter got diagnosed with Moyamoya a few months ago. She is scheduled for surgery in 6 days! We also have a cruise in the Caribbean which we booked over a year ago which will be about 3 1/2 weeks after her surgery. We will also be going to Disney World two days before the cruise. I was wondering about a related topic -- the GAC (Guest Assitance Card) that you can get for guests with special needs. This card enables you to stand in shorter lines at Disney World. Will Moyamoya allow her to get this card? I think you get a GAC if you go through Make-A-Wish, but if we don't go through them, would we still be able to get such a card with Moyamoya? She should be physically "normal" after the surgery, but I'm not sure if she will be weak or anything like that just 3 1/2 weeks after the surgery. Standing in 1 to 2 hour lines might be tough for someone after surgery. Anyone have experience with the Guest Assitance Card and Moyamoya / recent surgery?
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Title: Re: Make-A-Wish Post by Amit on Jul 14th, 2013 at 7:08am
hmm.. not sure if it is a good idea to go out and explore outside so much just 3.5 weeks after surgery.. I would say take rest for a couple of months.. Its a decent surgery and does take time to heal as well.. Did you check with your surgeons about this plan , post surgery ?
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Title: Re: Make-A-Wish Post by Steve on Jul 16th, 2013 at 4:26pm
We had the same concern as you. But Dr. Steinberg said this was plenty of time for her to heal before our vacation. We asked a couple of times and both times he said she will be fine.
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Title: Re: Make-A-Wish Post by Amit on Jul 24th, 2013 at 1:55am
That is good to know.. ur son took almost 6 months to recover from the surgery and the surgery site.
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Title: Re: Make-A-Wish Post by hrsridermom on Jul 30th, 2013 at 11:08am
You can go to guest services and get the card with Moyamoya. It is nice to have the wheel chair. they will tell you that your wait may not be any shorter in the lines but they do try to get you in cooler areas. Of they won't have a clue what Moyamoya is so be sure to tell them she is a stroke risk and needs to not over-exert. Have fun on your trip!
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