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Old 07-01-2013, 04:54 PM   #1
4pmama
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Ramona's Make-A-Wish trip to WDW!

First of all:

Ramona was approved by MAW on June 7th. We got the acceptance phone call from the wish coordinator, then got a brochure and welcome letter the next day They used a Toy Story stamp on her letter...and during the initial interview on the phone I said Ramona's fave movie was TS. Love their attention to detail already! We want to go mid-November, for a little Christmas magic without the crowds. I poured over EasyWDW to pick the perfect dates, which hopefully, we will get!

We are expecting our first contact from the granters ANY DAY now. From another family, I learned here in Oregon it's usually about 4 weeks from acceptance to getting the first call from the granters. We are almost to 4 weeks and my anticipation and excitement builds every day!

Now to meet the family:

I'm Caitlin, 26 years old, SAHM, wife, book lover, English major, Harry Potter fan, gardener, crazy chicken lady. We have 5 backyard chickens and I adore them. They are just 8 weeks old, so no eggs yet, but plenty of entertainment!

Next is Daddy. Jeremy is 27, works hard, loves the garden and the chickens, avid reader and LOTR and HP nerd. He is Ramona's step-dad but you wouldn't know it, because he loves her more than anything, and was 100% ready to take on the challenges of parenting a child with special needs. He's been her dad for 5 years. Bio dad is not in the picture at all.

Ramona-WISH KID! Ramona is almost 8. She is spunky, mostly happy , goofy and super excitable. She loves building towers with blocks, slapstick humor, Mickey Mouse, Toy Story, pirates , parks, pizza, helping cook, cuddling and taking naps. Ramona has Wolf-Hirschhorn syndrome aka 4p-, a rare chromosomal deletion affecting between 1:50,000 to 1:100,00 kiddos. It has a high mortality rate in the first two years, after which it drops dramatically, but major health problems remain for life. Ramona's biggest issues are frequent seizures, central diabetes insipidus and subsequent electrolyte imbalances (scary ), recurring upper respiratory infections and kidney disease. She is developmentally delayed, and for an age reference, she has many skills at around the typical 3-year-old level. She is beautiful and tiny, as these kids are always short statured and have a heckuva time putting on the pounds! She's 35 pounds currently! She can walk and talk, which is a major feat for a child with WHS-I never expected it! And she eats 100% by mouth and has for the past 5years.

Ezra, my 18-month-old. We waited to have a second, because of Ramona's health. We wanted things to "get easier". Well, they didn't. And they never will, really. They actually get harder in many ways! A change in perspective and expectations helped us reevaluate and we decided the time was right, and the end result of all this planning is the most adorable and hilarious kid ever! He is super active, into everything, talks constantly and follows Ramona everywhere like a little puppy. She gets sick of him pretty often but overall they are so sweet together and I know he is going to be a very special boy growing up with Ramona as his sissy.

Pictures to wrap up this post, and more on "why Disney?" later

Oops, need to post a few more times before I can add links to pics. I will do that here.











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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!

Last edited by 4pmama; 07-01-2013 at 04:58 PM. Reason: ADD PICTURES!
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Old 07-01-2013, 04:55 PM   #2
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7 posts!

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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-01-2013, 04:56 PM   #3
4pmama
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8!

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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-01-2013, 04:57 PM   #4
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9

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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-01-2013, 04:57 PM   #5
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And 10! Yeah!

Now I can post pics and reply to TR threads! :D
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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-01-2013, 05:00 PM   #6
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I am new to the board but wanted to say and

I am so excited for your family to have a great vacation! I wish I had enough money to sponsor a family for MAW- what a fabulous gift!
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Old 07-01-2013, 05:02 PM   #7
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Following along.
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Old 07-01-2013, 05:10 PM   #8
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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My daughter had her wish trip back in 2011, it was life changing.

Just had to say hi, your family is precious!!!
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Old 07-01-2013, 05:19 PM   #9
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Thank you <3

A couple more recent pics :D







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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-01-2013, 07:58 PM   #10
4pmama
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HI again

Thanks for the welcome and for following along! I am so glad to have found this board. I'm a planner, and once I knew Ramona wanted to go to WDW, I hopped online to start the fun stuff: research! This board, full of awesome people and parents and amazing kids, has taught me a TON about WDW and the MAW process. I know it will make our trip sooo much smoother and more fun having all the pro tips. So thank you! I haven't learned everything (of course!) yet, so be forewarned I will have lots of questions as we get further along!

Also, all the MAW trippers, I can't wait to go back now that I have enough posts and comment on all the PTRs and TRs! I have cried many times reading the amazing stories of MAW kids in the past couple weeks. Makes the world feel bigger and smaller all at the same time

Anyway. Sigh. More on Ramona's story next up?
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[FONT="Comic Sans MS"] http://www.disboards.com/showthread.php?t=3134773 MAW Family! Caitlin Jeremy Ramona (4p-/Wolf-Hirschhorn Syndrome-WISH KID!) and Ezra (Ramona's wild baby bro) Going to WDW November 2013!
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Old 07-02-2013, 04:00 PM   #11
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Hello, you have a lovely family!!!
My daughter had her wish trip to Disney World in 2011 at the age of 3, she is now 5, she has a rare illness, Evans Syndrome. This board is great for info, unfortunatly I did not find it before our wish trip, we took a second trip back this yr & that is when I found this board. I wanted to do alot of research to make sure this time was better than the last. When we went in May of 2011, it was way too hot for us 96 degrees everyday, so second trip, we went the last week of Febraury, awesome time.
I will be following your trip report!
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Old 07-02-2013, 08:06 PM   #12
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How exciting! I can just hear the excitement in your typing!

Praying that you have a magical time and that you experience loads of pixiedust!
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Next trip? Maybe DisneyLAND for Dec '14 or March '15
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Old 07-03-2013, 05:16 AM   #13
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Quote:
Originally Posted by 4pmama View Post
HI again

Thanks for the welcome and for following along! I am so glad to have found this board. I'm a planner, and once I knew Ramona wanted to go to WDW, I hopped online to start the fun stuff: research! This board, full of awesome people and parents and amazing kids, has taught me a TON about WDW and the MAW process. I know it will make our trip sooo much smoother and more fun having all the pro tips. So thank you! I haven't learned everything (of course!) yet, so be forewarned I will have lots of questions as we get further along!

Also, all the MAW trippers, I can't wait to go back now that I have enough posts and comment on all the PTRs and TRs! I have cried many times reading the amazing stories of MAW kids in the past couple weeks. Makes the world feel bigger and smaller all at the same time

Anyway. Sigh. More on Ramona's story next up?

Just popped back in to see the latest pics and agree with you, the DIS is amazing! You will learn a LOT and have lots of people willing to help answer your questions! Looking forward to reading more about your precious family!
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Old 07-03-2013, 01:05 PM   #14
Rx774
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Welcome to the board, and you indeed do have a beautiful family.

There are tons of people on here that can assist you. Half the time, you won't even have to ask, because you'll come across your own answers as you surf around others PTRs and TR's.

I agree with Blessedmom... those MAW trips our life changing. Even though ours was less than a year ago, i'll pour through those pics and videos, and it brings me right back. I recall feeling bad as the adult of having us return from DisneyLand to rest for a few minutes, before we went back out and did round 2. If we hadn't of done that, for ourselves, you would of found 2 exhausted parents curled up in a ball beside the front doors of Space Mountain.
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Old 07-04-2013, 06:45 AM   #15
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Judy, Pete, Christian, David, Rachel and Lisa
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