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Throughout the course of this journey we have kept a day-by-day journal... from the time of diagnosis, through all the ups and downs and into the present.

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Day + 1,251

5/6/2022

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We just got back from our Make-A-Wish visit to Disney… which was literally the trip of a lifetime!  This update may be a bit long, but given how long you all have been supporting James we thought it worthwhile to give you a glimpse into how special these Make-A-Wish trips are for kids.

Our trip started with a super stretch limo (aka “limbo” according to James) arriving to bring us to the airport.  As you can imagine, James thought he was the king of the world in this thing.  Despite the fact that it snowed in Chicago a few days before we left and was NOT warm out we spent almost the entire ride with the window down, blasting music and making trucks honk their horns.  

James has only been on a plane twice, once as an infant and again for a charity fantasy flight to the North Pole - so this was kind of like his first flight all over again.  Of course he thought everything was super cool, including standing on his seat and staring at the person behind us 5 inches from their face, which I’m sure they appreciated.  Also if you’ve never used an airplane bathroom with a child, and you’re 6’2” and barely fit in yourself, I’d highly recommend it.  Equally as fun.  James was also amazed that the bathroom light turned on and off when you locked the bathroom door- so that was entertaining for a good 10 minutes.

Once we landed in Orlando, an amazing volunteer (Denny) greeted us at the airport with a “James McCarthy” sign to escort us to our rental car.  Again, making James feel like the star of the show.  He thought it was SO cool!
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We packed up the car and got on our way to truly the most magical place on earth (it’s not Disney, it’s this place)… Give Kids The World.

Give Kids The World is a massive 90-acre non-profit that houses critically ill (or previously critically ill in our case :-)) children on vacations.  Even though it’s not owned by Make-A-Wish, it’s virtually all wish kids.  The story of how this place started is truly inspiring - I won’t detail it out but you can read it via this link:  https://www.gktw.org/about/henri-landwirth.php
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There are endless things to do and an insane number of amazing volunteers that give up their days and nights to staff the resort and make it the most magical place on earth.  The village can house about 190 families, most in their very own villas (see a million pictures below). 
At the time we were there the village was under 25% capacity because of various COVID reasons and the village (and Make-A-Wish) just getting back into approving and planning trips again.    The best part about this place were the amazing volunteers... 100% of whom are focused on making this the most incredible experience ever for all the kids.  It was also, in some strange way, a relief for James not to be the different kid but rather different was the norm there... really good for him to see and live that to get perspective on his situation, even at just 5 years old.

James also received a star to put up in the "Castle of Miracles" - something every wish kid that visits gets to do.  It's both inspiring to see all the stars and sad.... there are over 175,000 them in the castle.

At breakfast each day a volunteer would help James get a tray and walk him around the cafeteria / restaurant to pick out wherever he wanted for breakfast.  If I wasn't supervising James, he would routinely come back with 2 - 3 full plates of food exploding off each side of his tray.  James' breakfast drink of choice was 50% sprite and 50% water from the pop machine. It was pretty much a "say yes to everything" trip and just let James do anything and everything.  James made many friends at breakfast, John and Lisa (pic below) were a few of his favorites and would even talk about them hours later, saying how nice they are and that they were "really good friends" and that he missed them.
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The village also had Halloween one night, Christmas another, etc... it was pretty cool that the repeat this every week for a new round of kids 24x7x365.

​The parks themselves were obviously fantastic... we were VERY spoiled as we had a fast track to the front of every line and every park we went to.  The longest line we waited in was probably 10 minutes and for many rides it was just a few minutes when everyone else was waiting an hour or two for some of these rides.  James' skin is pretty sensitive in sunlight so not being in the blazing heat (no complaints, it was great) and having more control over our day was HUGE.  In a normal trip to the parks I would imagine you'd do 4-5 rides and James got to do 3x that and some of them more than once.  

​All that was amazing (and we will never experience it again at this level) - but really it was amazing because of the amount of joy it brought this kid and feeling so special while we were there.  The memory of the time we waited (or didn't wait) will fade as the years go on but what won't is everything about this trip being special for James and him being the star of the show.  That's what made all this great.  Here's a few videos of James being goofy in the limited lines we did have to wait in, often making all the people around us laugh with his silly and warm hearted nature.
Below is a video of James' first ever rollercoaster ride, Slinky Dog Dash.  You can gather he is 1/2 terrified and 1/2 excited... of course we immediately had to go on it again and this set the stage for a lot of other kid-friendly rollercoaster rides at the other parks.
James was able to meet a ton of characters at the parks (and at Give Kids The World) which was pretty cool.  Many of them could tell he had some health challenges due to not having hair and spent way more time talking to James than usual... the really went out of their way to make it super special and memorable for James.
It truly was the trip of a lifetime and something we all will remember forever.  We are so grateful that James felt so great during the trip and could really enjoy the magic of GKTW and of Disney.  Thank you again to the amazing people at Make a Wish, GKTW, and all of you for supporting us over the last 4 years.   Please know we wouldn't have made it here without you and are so happy to be sharing good news on these updates!  Now to some photos...
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We hope to be writing another update in June with the the fantastic news that James has been DISCHARGED from care.  Until then, we hope everyone has a great end to the school year... and will leave you with one last laugh.

This is a helmet James got at the Star Wars exhibit... found him like this in the bathroom the next day!  Saving this to show his friends when he's in high school...
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    Dan McCarthy, dedicated father and happy husband

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