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Old 07-11-2012, 07:15 AM   #1
AmberGreenawalt
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Princess Savannah's Magical Make A Wish Trip

Welcome! It’s with great excitement that I am starting this pre-trip report. My name is Amber, I’m 29 and I big pink sparkly heart love Disney! In my former (pre-mom) life I was a Corporate Event Planner specializing in themed events. These days I stay busy as the manager of our crazy-wonderful household and side-line on occasion as a professional photographer. I don’t have to go far to find great subjects. I have three wonderful ultra-outgoing and energetic children, Sebastian 7, Siennah 5, and Savannah 3. I also have one heck of a fantastic husband, Brian, 39, who totally keeps me sane. We will celebrate 10 years of marriage this fall.

Sebastian, our firstborn, is our red-headed wonder. He has my freckles, dimples and stubbornness. At seven years old he ALL boy --boundless in energy and adventure. I wish I could bottle up some of the gusto that he displays daily for life. He fills our days with giggles, silly jokes and an almost constant sound track of race car and light saber sound effects. He is bright and boisterous, sweet and sensitive, expressive, thoughtful and kind. Really, all that a Mom could ask for in a son!

At the age of three Sebastian was diagnosed with Multi-Centric Osteoclastoma—Giant Cell tumors that destroy his bones. His presentation is exceedingly rare as these types of tumors do not usually occur in children or simultaneously throughout the body in more than one location. He has had five surgeries since diagnosis including a craniotomy to remove a golf ball sized tumor from his skull.

Giant cell tumors are locally aggressive and have a 60% chance of recurrence. The treatment for him has been repeated surgery. Which means that we wait to see if the tumors grow back or more develop and then cut them out with radical margins. His team of oncologist and surgeons have declared his scans clear now and we recently celebrated the end of his therapeutic care plan. No.more.radation! (Feel free to do a little happy dance right now with me). He has been such a strong and brave boy throughout this whole long ordeal and I could not be more proud of him!

Sebastian was granted a wish by the Make A Wish Foundation in 2008. His wish was to meet Buzz Lightyear in Disney World. His Pre Trip Report is linked in my signature. I never got a chance to finish it and turn it into a “trip report” because our lives were taken over by another whole medical misadventure that I’ll explain more about in a bit.

The middle of my heart belongs to Siennah who is 5 (soon to be 6). She has big brown eyes with eyelashes that go on for miles, long blonde hair and a sweet dimpled smile. Some days I think it’s her smiles alone help keep me afloat. I believe that the Lord sent us this funny, sunny little girl to add a healthy dose of levity to our life. She is bubbly, beautiful, expressive, independent and smart. Crazy smart! She has a vibrant personality that radiates happiness. I never cease to be amazed at how she spreads joy to so many people solely by her warm and affectionate nature.

My worry for Siennah is that she gets enough. Enough time. Enough attention. Enough love and kisses. Enough of me. She doesn’t get the one on one days at the doctor that her siblings do. So I make an extra effort to make sure that we have some special time for just the two of us. She doesn’t quite understand why it is BETTER to not be a child who gets a wish granted…so I’ve got a little something special in the works just for my Ennah. I got tickets to a matinée of the musical Wicked in March for just the two of us. Shhh.

My youngest is Savannah. She is who this wish trip is all about.

I was pregnant with Savannah at the time that Sebastian was diagnosed and was in my third trimester by the time we started the wish process in June of 08’. Not wanting to go to Disney nine months pregnant in the summer or with a brand new born we opted to wait until December. We also wanted Sebastian to have a chance to have a port a cath surgery done and heal.

Savannah made her debut three weeks early –a tiny package of heart wrenching charms. You would think that by the time she came along I would have this mothering business down…but she has brought lessons all her own.

On the outside, Savannah looks and acts like a normal 3 year old (soon to be 4). She is smart and mischievous, ornery and loving. She has curly dark blond hair, slate colored eyes and the sweetest dimpled smile that will win the hearts of anyone who sees it. But on the inside of Savannah, there is a battle going on at the cellular level. Savannah has Mitochondrial Disease complex I and complex III.

The complexes are part of something called the electron transport chain, also known as the respiratory chain. This has nothing to do with breathing. The reason it is called the respiratory chain is because mitochondria, sub cellular organelles, oxidize sugars and fats to produce chemical energy called ATP so your cells can live. Mitochondria produce 90% of the body’s energy. Without energy, organs and muscles fail. I often use the metaphor of trying to power a city with an incomplete or faulty power grid…Kind of like a brown out in your body.

Mitochondrial disease is very hard to diagnose and there is little awareness of it, even among doctors. Savannah was actually admitted to the hospital for the first time just a week before Sebastian’s wish trip. We had his Wish celebration and then a day later she was inpatient and our world once again was rocked. I will never forget having both Sebastian and Savannah in surgery at the same time just two days before Sebastian’s wish trip. Since that first stay she’s had more tests, surgeries and procedures than I can readily recall with acronyms in just about every combination of the alphabet as we tried to figure out the cause of her multitude of symptoms. Our hearts ached time and again as we watched her get poked and prodded for test after test, struggling through one illness after another.

When Savannah was ten months old we took her to Atlanta to see one of the leading mitochondrial doctors in the nation, to have a consultation, and fresh muscle biopsy performed. Many consider this to be the “gold standard” and sometimes only way to test for mitochondrial disease. After nearly a year of searching for the root of Savannah’s medical issues, and 3 weeks after her first birthday, we received a diagnosis.

Savannah is followed by more specialists than she has letters in her name. They all keeping a close eye on how this disease affects each organ in her body. She’s taken numerous medications to help her mitochondria absorb more nutrients to produce more energy and to keep the infections she is super prone to at bay. She has good days where she looks like a normal kid exploring the world at lightning speed, and she has “off” days where she, experiences pain, battles respiratory issues, low blood sugars, awful GI issues, and sleeps in utter fatigue. We have learned to change our lives and adapt as we go along. There is no road map or instruction manual for having a child with mitochondrial disease. It is a chronic, progressive, and currently incurable disease.

What we do know is that God has given us the grace and strength to enjoy each and every wonderful day he has given us with our precious children…and for each day, we are thankful.

With Savannah milestones bring a special kind of pride. We have had all kinds of predications made about her. Early on we were told that she was not likely to ever walk or talk. She can now do both of those things! Heck! She saunters and sings! Brian and I have never set any limitations on her and as she has progressed, in her own time, we have rejoiced! All the hard work is worthwhile as I’ve seen everything we have poured into helping Savannah make a difference.

So let’s talk about DISNEY!

One of MY greatest wishes in life came true in October 2007 when we took our kids (Sebastian then 2 and Siennah then 14 months) to Disney for the first time….For as long as I could remember I wanted to be a Mom and for as long as I wanted to be a Mom I wanted to take my children to Disney. I will never forget that happy-tears moment when we stood on Main Street as a family for the first time. I grew up in Florida and Brian and I had been annual pass holders in our dating and early married life but there was something truly special about seeing it all through the wonder-filled eyes of your children.

We have since taken our family to Disney almost yearly. Like any other family affected by huge medical issues it has impacted us financially. Big time. But the journey we have been on has also shaped what we choose to spend our “disposable” income on. We are a family that tends to put making memories together as a priority waaaay above stuff…even though things can be more tangible the quality time together is a far more valuable commodity to us. For example the last two years we opted to give our kids Disney tickets for Christmas (from Santa) instead of big ticket toys. I will never regret this. Disney and our time together there has become so special to all of us. Our experience is that planning any kind of Disney vacation brings everyone in our family “hope” and something to look forward to through all the crappy days. There’s something amazing about riding real roller coasters instead of metaphorical emotional ones!

It came as no surprise at all to us that Sebastian would follow in his Disney loving parents footsteps and choose meeting Buzz Light year as his wish in 2008. Having had one child with a life threatening medical condition that was eligible for a wish we knew early on that Savannah would certainly qualify too. For us it was a matter of when to have her make her wish.

Brian and I were planning a trip to Disney for the early Spring of 2013. I’d been on the lap-top just starting to lay things out when Savannah came into my room decked out in full princess finery right down to the plastic high heels. She sashayed toward me, walking right foot together, left foot together singing, “Here comes the Princess. Here comes the Princess.” And it just kind of hit me. It’s time.

She’s old enough to remember it but young enough to still be so full of wonder and awe…She’s mature enough to choose for herself what she wants to do….And most importantly she’s medically stable enough now to enjoy it… we now know how to treat on our own some of the stuff that used to land us straight in the hospital.

We are at the very beginning stages of her wish process. Our Chapter has sent off her medical eligibility forms to her specialist and we will wait for approval.

I don’t know exactly what Savannah will wish for but seeing as how she is OBSESSED with Princesses and Weddings and Disney, It's a sure bet that it will involve some combination of those three. She has been telling us for a good year and a half now that she is going to be a Princess and marry her best buddy Finn (aka Prince Charming), that she is going to wear spark-a-lee high heels, with a crown on her head and a Princess dress and that this is all going to happen at Disney World.

Disney is actually the number one wish of kids who have faced a life threatening condition. They work with Give Kids the World (GKTW) to grant thousands of wishes each year. With Disney being the most common request the “Disney Wish” process has been made into a smooth and streamlined experience yet personalized and unique depending on each child’s specific Disney wish. Most Wish trip kids stay at a resort called Give Kids the World. This resort is like a wonderland that exists solely for wish trips. The whole thing was started by a Holocaust survivor named Henri Landwirth. (You have to check it out for yourself at http://www.gktw.org/ and read Henri Landwirth’s biography, Gift of Life. Amazing.)

Make A Wish takes care of the transportation to and around Orlando and spending money. Give Kids the World provides accommodations in one of their two bedroom spacious villas. The theme parks provide donated theme park tickets. They offer 3 day park hopper tickets for the four Disney parks, 2 days park hopper tickets for Universal Studios and Islands of Adventure and 1 day tickets for Sea World as well as other are attractions like Bush Gardens and Lego Land upon request.

GKTW also provides all meals at the resort for free to the wish families. They serve breakfast and dinner in a restaurant called “The Gingerbread House” and frozen delights are available all day long at the “Ice Cream Palace.” The Village also has a carousel, mini golf course, Castle of Miracles, arcade, pool, splash area, train and Movie Theater. They host a plethora of activities during your stay such as horseback riding, pirate and princess parties, character meet and greets and a life size game of Candy Land. They even make it Christmas once a week complete with Santa, carriage rides, snow and twinkling lights!

It is in short one of the coolest places on the planet.

We are hoping to be able to stay at GKTW for Savannah’s wish and go during the week that our kids will have off of school from February 23rd-March 4th. Savannah can’t tolerate heat so anything in the summer is out.

Knowing that GKTW only allows for a six night stay we would like to extend the trip on our own dime. We did this with Sebastian’s trip in 2008. We like to pace it out…and that would honestly be hard to do with the 3 day Park Hopper that wish families get. Plus Savannah just can’t handle commando touring and Brian and I will be turning 30 and 40 at the end of that week so we’d like to stick around and celebrate in the Happiest Place on Earth.

I am looking to rent DVC points for three nights so if anyone has any to sell at a reasonable price please send me a message.

We have requested our same wish granters. Like everyone else involved with Sebastian's wish they became a part of our life and dear friends. I mentioned this when we spoke with the Make A Wish Foundation folks and they didn’t say no so I’m hoping that means yes. If anyone else out there has had/heard of repeat wish granters for the same family feel free to chime in.

We are hoping to have things in motion enough to be able to tell Savannah we are a “go” on her 4th birthday August 2nd—for which the theme is Bibbity Bobbity Birthday Ball. So keep your fingers crossed with us that her doctors in the busy Metabolic Genetics division at UNC Chapel Hill are able to respond quickly.

As for me, I am looking forward to having a reason to be back on the DIS more again!

Four years later the impact of Sebastian’s wish on our family is still being felt and that’s due in no small part to the interactions I had on these boards. It brought a whole AMAZING set of people into our life. The incredibly talented ladies and gentleman (heart you Tom!) who blessed us with the Big Give, the other wish families and the scores of kind hearted individuals who read Sebastian’s PTR, who followed us over to our family blog and who now through the wonder of the internet I get to “talk” to every day on facebook.
So often this wonderful and eclectic group of people are the thread that has brightened my days. From near and far they have supported us. They have cried with us, screamed with us and stormed the heavens with prayers for us and sent countless encouraging comments and pep talks our way. They have been willing to love us without thank you cards, or message responses, OR even finished trip reports.

I never would have known then that googling the words “Wish Trip Disney” and finding the first Wish Trippers Unite thread on the DIS would lead to these friendships. I don’t know that it’s possible to fully express the depth of my gratitude for these DISers. Without them life would have less laughter, less fun and a lot more anxiety. Because of them my life is stronger, fuller more beautiful and gracious.

I’m hoping to interact with them again on here and have new folks become part of our story. Because when you get down to it, the reason we write and post on these boards ---is community. I’ve found other people who face similar or different challenges, and whose talents have inspired me. (After our Big Give I went on to try my own hand at sewing and my love for Disney customs is now a full blown passion.)

I also really enjoy the feedback. Without readers and comments, all we would be doing is talking to ourselves. And while there’s value in that as well, it’s the feedback, the brainstorming, and the knowledge that others are getting some kind of enjoyment or usefulness out of what I have to say that makes the time spent in front of the computer screen trying to think of the exact right words to express myself, completely worthwhile. So please do “subscribe”, come back visit and chat.

Now who would like to see some photos next?
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Old 07-11-2012, 07:40 AM   #2
twob4him
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I'm here !!!! Am I first??? So excited to hear all about this trip!!!
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Old 07-11-2012, 07:53 AM   #3
mphalens
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Aw man! I know the story and I'm fighting back tears right now. You know I'm along for the ride (and Mr Finn just asked what I was reading and wanted to know where the pictures were, so I know he's going to be "looking along" too).
Love you friend xoxo
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Old 07-11-2012, 07:56 AM   #4
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i'm here too. so excited to read!!!
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Old 07-11-2012, 08:02 AM   #5
DMGeurts
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The start of your PTR just brought tears to my eyes....

I just wanted to say... Hi!

I know Marianne, and she has become a good friend to me - I have seen dozens of photos of Finn and his Vannah, which are the sweetest photos ever! They just melt your heart!

I was so excited when I heard you are going to be able to take your family for another Wish Trip! There is a small chance that my girls and I will be there at the end of your trip. They start their Spring Break on March 7th - and if the stars align (aka: airfare is cheap) I plan to pull them out of school a couple of days early.

Anyways - I don't think I have seen photos of the rest of your crew - so I am anxiously awaiting those.

D~
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Old 07-11-2012, 09:27 AM   #6
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I am here too!! Cant wait to follow you "again" on your incredible journey

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Old 07-11-2012, 09:37 AM   #7
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Haven't been on the Dis in forever! Your PTR will change that for sure! Love your family!
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Old 07-11-2012, 10:01 AM   #8
ndloewen
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Love your sweet little Savanah and so excited for you all!! Hoping our visas go through and we will be volunteering at GKTW by the time you go. Would love to meet your beautiful family in person!!
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Old 07-11-2012, 02:00 PM   #9
AmberGreenawalt
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I want to post a few videos in this PTR to help those new to our story get to know us and a little bit more about Mitochondrial Disease...

The first is a video I made to raise awareness about Mitochondrial Disease. It features Savannah and some of the other children we know who are fighting this disease. They are thousands more out there and they are all worth a cure. So if you have a few minutes and you would like to learn more about mito please watch this video and feel free to share it with others.

Videos about Savannah:

Savannah's Story

Savannah's 2nd Amazing Year

Savannah's 3rd Incredible Year

And here is a short video looking back on Sebastian's story.

Hopefully these will help you get to know our family a little better. Back later with Disney photos!!
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Old 07-11-2012, 04:06 PM   #10
Moodyzblu
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I'm in !! Can't wait to follow along on your wish process !
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Old 07-11-2012, 04:19 PM   #11
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I'm looking forward to your updates and getting to know more about your family!
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Old 07-11-2012, 08:32 PM   #12
AmberGreenawalt
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Memory Lane

I spent some time today going through my Disney file folders picking out some of my favorite photos through the years. As so many sweet memories came rushing back I thought about how great it would have been to have done full trip reports. Ah well, life happens as it may. I thought we'd take a little stroll down memory lane together reminiscing about past trips as we wait to hear from Make A Wish about Savannah. This set are from our trip to Disney in 2007. Our first time seeing the world through the eyes of our kids. I can't believe how much Sebastian and Siennah have grown since then. I also can't believe that at this point in time our lives were untouched by serious illness. So much was about to change.

This was Sebastian getting a hair cut at the Harmony Barber Shop....




Just two months after this trip I would take him to get his hair cut at home and we'd find the lump on his head that turned out to be a tumor.


It was the "Year of a Million Dreams" and we were fortunate to recieve this little moment of magic...



Normally the Princesses will only pose for photos individually but as our family entered the room they closed down the que and we had our own private time visiting with Belle, Aurora and Cinderella.

The kids saw Cinderella's Castle for the first time...



Stich rode Dumbo with us...





Siennah rode the Tea Cups for the first time...



and the Speedway....



Brian and I rode Everest for the first time...



We laughed at all the lame jokes on the Jungle Cruise for the first time....



And we all rode in the front car of the Monorail. Back when that was allowed...



The kids napped on the Monorail...



And we ate at Liberty Tree Tavern back when they still had characters...



Siennah loved the Princesses and Jane at Akershus...



and Sebastian proudly wore his kisses from the Princesses...



Brian and I changed a diaper without losing our illumination spot...



I bought my Minnie hat that I have worn on every trip since...



Siennah made the sweetest little Minnie Mouse...



and had the sweetest little intereaction with the real Minnie Mouse...



And dare I say she made an even cuter Tink...





We got drenched at Blizzard Beach and Typhoon Lagoon...



We had the best time dancing with the characters at Mickey's Backyard BBQ...



Sebastian was a part of Woody's Round Up...




Met Lightning McQueen before he had his own garage...



and Sebastian had the character interaction that inspired his wish...

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Old 07-11-2012, 08:44 PM   #13
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Yay! I am in I spent one tearful night reading your PTR from your son's wish. Once I started reading your story...I couldn't stop
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Old 07-11-2012, 08:54 PM   #14
blessedmom4
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Hi Amber, Not sure if you remember me...I read Sebastian's story a while back and know Marianne as well. She actually helped me with Lisa's Wish Shirts when we went on her MAW trip in October. I just wanted to say hi and welcome back!
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Old 07-12-2012, 04:56 PM   #15
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I'm so happy you have a PTR started! In the years (has it really been years?) since Sebastian's Wish Trip I feel like I have come to know and love your family. You are such an amazing mom and I have loved watching your kids grow up. I can't wait to follow along and watch the magic unfold!
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