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Old 03-02-2011, 05:21 AM   #1
LVMom23
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Make-A-Wish and "M to the I, I, C to the K E Y, M O U S E" for Hannah!

Table of contents at the end of this post

My youngest child, Hannah, was granted a wish through Make-A-Wish, and we are meeting with the granters on Friday evening, 2 days! I'm very anxiously excited, as I would really love to be able to take her and her brother and sister to WDW and stay at GKTW.



Hannah is 2-1/2, and she was diagnosed with neuronopathic Gaucher's disease when she was 5 months old. Basically, she is missing the enzyme the breaks down fat in her body so it accumulates in her spleen, liver, bones, lung, and the worst part, it accumulates in her brain and kills her healthy brain neurons. She gets treatment every 2 weeks to help break down the fat in her body, but it doesn't cross the blood-brain barrier which creates a progressive neurodegenerative neuromuscular problem.

She is an amazing, amazing little girl! Her first prognosis was 9 months, then 18 months, and now they are "We just don't know." She is full of smiles, loves her brother and sister, and is just an overall happy little girl. Developmentally she is at about a 12-month level globally, and she has been that way for about a year. She has lost some skills over the past few months, but we continue to work with her on rebuilding them.



She has become addicted to her iPad, and it has been fantastic for working on her fine motor movements. Her favorite toys are those with music and/or lights. Her Mickey Dancestar toy has gone through dozens of batteries since she got it for the holidays. She also loves watching The Wiggles, Elmo (only the songs), and yes, she is a Gleek (smiles hysterically during Glee's Ice Ice Baby and Bad Romance song). She loves looking at books, especially those that are board and foam with bright colors and pictures.

She has a trach and a g-tube, and her list of conditions because of her disease is sadly too long. Most significantly, she has a choreathetoid movement disorder, hypotonia, abnormal eye movements and nystagmus, ataxia, enlarged spleen and liver, and a few more.



Our goal for parenting Hannah every day is to make sure she feels loved with tons of kisses, happy, comfortable, and painfree. We know each day with her is an incredible gift, and I always feel intoxicated with her smiles and love.



Hannah's big sister, Abby, is going to be turning 7 in a month! She is definitely a girly girl, and she loves dressing up. She loves, loves, loves the disney princesses, especially Belle. She is the athlete in the family, having just completed her baseball season as the only girl on the team yet the one with one of the top hitting records! If she could outdoors all day long, she would.

Hannah's 10yo big brother, Ethan, is Hannah's hero. He comes into the room to talk and play with her, and she just lights up. He is very sensitive, incredibly smart, and charming. He loves Star Wars and Harry Potter, and he loves playing Wii, legos, and puzzles.



We really think that WDW would be an amazing experience for all three kids because just picturing Hannah's face during the parades and slow rides would be priceless! I would also love for her to get some one-on-one time with Mickey, Minnie, Donald, and Daisy just so she can see them and touch them in a non-rushed atmosphere.

I also want the kids to experience WDW in a way that they would not only be able to do it less rushed, but I want Ethan and Abby to also be treated like royalty. Because Hannah's medical needs are so extensive, there would be no way we could do a trip like this on our own.

So if you are still here, hello! I am a talker and a blogger. If you want to learn more about Hannah, you can check out our blog at http://www.littlemisshannah.com

Here are some videos of Hannah!

Learn more about Hannah's disease.

I'll update again after our meeting Friday evening!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Table of contents
~ Meeting with the MAW grant team
~ First step in planning!
~ Hannah and her Minnie
~ Tentative dates and reality check
~ Excitement mounting!
~ Planning anxiety
~ Meaning of this journal's title
~ Approval glitch?
~ It's official! We have dates!
~ Breaking it to the kids
~ Their response!
~ Creating Disney Memories
~ Oops! Wrong dates, but we get flight times
~ Flight questions
~ Big Give - Teaser!
~ Big Give - mommy2mrb
~ Planning do-able rides (plus older pic!)
~ Big Give - Ellenbenny
~ Big Give - Crissyjb
~ Little more planning and nursing woes
~ Big Give - Five gives teaser!
~ Big Give - Disneycp2002
~ Big Give - jcwill529
~ Big Give - mmiprender
~ Big Give - vbandrea
~ Big Give - Blyssfull
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[COLOR=DarkOrchid]Mom to 3 kids including Hannah, 2-1/2yo with neuronopathic Gaucher's disease
WDW & GKTW watch out, we will be there 4/24 to 4/30! Thank you, Make-A-Wish!
Make-A-Wish and "M to the I, I, C to the K E Y, M O U S E" for Hannah! - our PTR!
Hannah's blog: http://www.littlemisshannah.com

Last edited by LVMom23; 04-05-2011 at 04:55 AM.
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Old 03-02-2011, 05:35 AM   #2
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So happy you started a PTR and I can't wait to read along! Your family is beautiful!
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Old 03-02-2011, 06:18 AM   #3
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Welcome!! I look forward to reading more! Good luck with the granters this week!!
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Old 03-02-2011, 08:16 AM   #4
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Welcome and glad to met you! Thanks for starting your PTR!
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Old 03-02-2011, 08:19 AM   #5
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Hannah looks like a special little girl, full of smiles and cheer. I'll be checking your trip out for sure!!
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Old 03-02-2011, 11:00 AM   #6
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I can't wait to hear what happens on Friday. The kiddos are a cutie pie!!
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Old 03-04-2011, 04:54 AM   #7
LVMom23
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We have our meeting in 14+ hours with the grant team for MAW!

After reading some of your PTR and seeing how excited your kids are with all the preplanning things, I am so hoping that we get WDW granted for Hannah's wish.

Hannah has been delaying her second naps for the past few days, and tonight she slept from 4:30 pm to 7:30 pm. Our meeting is at 5:30 pm tonight. I hope, hope, hope she isn't sleeping while they are here!

I wonder if we do get it granted, if we are able to help determine the best dates to go? Hannah has trouble being outside for periods of time when it is really hot, so we really would like to try and go sometime between April and May. I know it is really soon, so we will see.
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[COLOR=DarkOrchid]Mom to 3 kids including Hannah, 2-1/2yo with neuronopathic Gaucher's disease
WDW & GKTW watch out, we will be there 4/24 to 4/30! Thank you, Make-A-Wish!
Make-A-Wish and "M to the I, I, C to the K E Y, M O U S E" for Hannah! - our PTR!
Hannah's blog: http://www.littlemisshannah.com
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Old 03-04-2011, 05:12 AM   #8
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Have a WONDERFUL time with the Wish Granters!!! I hope you have a lot of fun and Hannah is awake! I understand about the heat, that is a huge issue for us as well. Our Wish granters told us they could pull a trip together with very little notice, it just depends on GKTW availability. They even offered us off property if time became urgent. Of course we really WANT to stay at GKTW!

HAVE FUN!!!! Looking forward to seeing how it goes and don't forget to take pictures!
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Old 03-04-2011, 08:31 AM   #9
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Your Daughter is Beautiful.
Good luck with the wish granters tonight
Make sure they know she can't handle the heat and you are hoping to go soon before it gets too hot.
You really want to stay at GKTW if you can that place is amazing
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Old 03-04-2011, 09:35 PM   #10
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Hi!!

Waiting to here some good news from your meeting!! Your kids are so cute!!!
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Old 03-05-2011, 02:35 AM   #11
LVMom23
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(reprinted from my blog)

We had our Make A Wish meeting with the MAW grant volunteers tonight.

When I saw the three of them through our front door gate with a huge Minnie Mouse stuffed animal, Minnie balloon, and carrying an armful of toys, it caught me off guard! I just wasn’t expecting that! Not only did they bring gifts to shower on Hannah, but they brought very thoughtful gifts for both Ethan and Abigail. Ethan and Abby were thrilled and played with them the entire time the grant team was talking to us!

They knew beforehand that we wanted to take the kids to Disney, and we knew as soon as we saw the big Minnie Mouse that there was a good chance this wish would be granted. We discussed how our main wish is to stay at Give Kids the World and to take the kids to Disney World and to Universal Studios (Ethan is dying to see the Harry Potter show). They even mentioned Sea World as a possibility, which is my favorite place in the world!

Hannah was in a great mood during the 90-minute visit, showing off her beautiful smile. Granted she played with the iPad most of the time, but she was just so happy so that was good enough for us!

We talked about what medical needs we would need to prepare for in order to travel, what things they need to be aware of (like Hannah’s heat intolerance issues), and dozens of other questions that were obviously asked in order to give Hannah the most comfort and fun. We talked about noises, smells, and other things that could affect Hannah’s enjoyment. What was great was they asked questions that were important but I would not have thought about it.

We also discussed a backup wish, just in case this one can’t be granted. We assume that if this one can’t be granted, it is most likely because Hannah would not be able to travel or tolerate the trip. So we came up with asking for a backyard playset for the kids that had both regular and special needs equipment, covering to block out direct sun, and a foam floor for safety. It is something that we have always wanted to get the kids, but it is just too dang expensive for us to do right. So it is a perfect backup wish, just in case.

Because of Hannah’s issues with the heat, we are hoping to go sometime within the next three months before the summer heat hits in Florida.

The next step is to have Dr. Bernstein, her specialist here, approve our request and then the MAW team puts it all together and we continue the planning from there!

I’m very excited. I will admit it. What I am most looking forward to (if this does come to pass), see Hannah’s face with all the lights, bright colors, and sounds. Also, I want Ethan and Abby to be spoiled beyond spoiled for the week – they so deserve it! Best of all, I want Ethan and Abby to have memories of an amazing trip with Hannah, something special, something they will always cherish.

Our meeting with the MAW Grant volunteers
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[COLOR=DarkOrchid]Mom to 3 kids including Hannah, 2-1/2yo with neuronopathic Gaucher's disease
WDW & GKTW watch out, we will be there 4/24 to 4/30! Thank you, Make-A-Wish!
Make-A-Wish and "M to the I, I, C to the K E Y, M O U S E" for Hannah! - our PTR!
Hannah's blog: http://www.littlemisshannah.com

Last edited by LVMom23; 03-27-2011 at 02:31 AM.
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Old 03-05-2011, 04:03 AM   #12
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Sounds like a perfect meeting!!! Love the picture
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Old 03-05-2011, 07:31 AM   #13
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YAY for a great meeting!!! THat was so nice that they brought along some gifts for the kids to make the time extra special!!! Hope you get dates real soon!!!!!
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Old 03-06-2011, 04:23 PM   #14
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That sounds like a great meeting!
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Old 03-06-2011, 05:37 PM   #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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What a BEAUTIFUL photo and what fun you had...sounds like the magic has already started!
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