Princess Savannah's Magical Make A Wish Trip

[pigget74]

After months of waiting through the wish process we received some very disheartening news in a letter from Make A Wish. It read…

"Make A Wish of Central and Western NC has concluded that her [Savannah's] condition does not meet the medical qualifications for a wish. We regret that we are unable to fulfill a wish for him/her."

I’m sad that Savannah won’t get the magic that comes with that special Give Kids the World Button or super useful GAC or get to experience all the wonder of Give Kids the World since only a wish granting organization can make a reservation at Give Kids the World ---we'd be willing to pay for it… We just can't make the reservation or get all that goes with it without an organization to handle it. I don’t know that I have it in me to start the process with another (maybe more enlightened) wish granting organization. Once DVC points are paid for anyway we cannot cancel.

I am still going to try my darndest to make the trip an extra special one for Savannah. I’ll sew what special outfits I can and put her hair up in a princess bun and bring her Halloween costume wedding dress. I will celebrate her bravery all these years…because she deserves it every bit as much as her brother did. Just as that of any other child with Mitochondrial Disease who looks perfectly normal on the outside but battles an invisible, unpredictable disease on the inside.

[Our Savannah in her Halloween costume at neighborhood party last weekend]

Amber, I know we have already talked, but I know that you will make this trip very special for her. I am sorry that you will not have the help from MAW---can you still get the GAC card? Happy planning!

 

[oklamomof4boys]

I am so sorry Savannah is not getting her wish. While I am so appreciative of MAW and Nathan's trip, I get very frustrated with the inconsistencies within MAW. Nathan's heart had been stable for many years when his wish was granted but since that could change at any time he qualified. Using those guidelines, savannah should qualify. Nathan really wanted a Disney Cruise for his trip but they highly discouraged that and said it would only be a 3 night cruise, even though I know many kids granted a longer cruise. In retrospect, that was a blessing because GKTW was so incredible. MAW refused to let us extend our trip on our own dime- they wouldn't delay our flights a few days. I couldn't understand that since it wouldn't have cost them anything! For our family, getting to Florida is a huge expense! Recently MAW changed where a child with a heart transplant doesn't qualify unless it is less that 1 year post transplant. So kids who had them as infants can't get a wish. A heart transplant is not a cure!

There are many other wish granting organizations- and many of them use GKTW. Maybe you can check into them. Your sweet Savannah deserves a wish!

 

[kritter47]

I posted this on the other thread, but I thought it deserved re-iterating here:

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical professional (at least in my experience - I've never heard of a 'Medical Advisor' and your chapter doesn't have one listed on the website - perhaps it's a third-party doctor they go to when there's questions of eligibility?), so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

Now, why was there so much mis-communication between the office and you? That I can't answer. It sounds like it could have been handled much better on the chapter's end.

I hope whatever trip she goes on she has an absolutely fabulous time.

oklamom - I think you ran into a conflict with how rules/funding are different between chapters. In one of my chapters, Disney Cruises were limited to three nights while in another one I think they were 5-6 nights. That had everything to do with that chapter's level of funding, the cost of transportation from the cities involved and existing sponsor deals (which can be signed either with either local or national chapters). Cruises on other lines may be longer. It's the same thing with extensions, which probably had more to do with airline flights. Sometimes a chapter can easily get a flight four days later or whatever for the same price. Sometimes it's just not possible. I understand how that's frustrating, but I think it's sadly inevitable. A real strength of MaW is the chapter system because it enables each chapter to best know and interact with the kids in its area, but it also does cause inconsistency.

I haven't heard the heart transplant thing at all - would you mind letting me know where you heard that? I would like to ask my coordinators about it because I can't imagine how that would be true, and I can't find any evidence of it either online or in my e-mail.

 

[oklamomof4boys]

I posted this on the other thread, but I thought it deserved re-iterating here:

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical professional (at least in my experience - I've never heard of a 'Medical Advisor' and your chapter doesn't have one listed on the website - perhaps it's a third-party doctor they go to when there's questions of eligibility?), so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

Now, why was there so much mis-communication between the office and you? That I can't answer. It sounds like it could have been handled much better on the chapter's end.

I hope whatever trip she goes on she has an absolutely fabulous time.

oklamom - I think you ran into a conflict with how rules/funding are different between chapters. In one of my chapters, Disney Cruises were limited to three nights while in another one I think they were 5-6 nights. That had everything to do with that chapter's level of funding, the cost of transportation from the cities involved and existing sponsor deals (which can be signed either with either local or national chapters). Cruises on other lines may be longer. It's the same thing with extensions, which probably had more to do with airline flights. Sometimes a chapter can easily get a flight four days later or whatever for the same price. Sometimes it's just not possible. I understand how that's frustrating, but I think it's sadly inevitable. A real strength of MaW is the chapter system because it enables each chapter to best know and interact with the kids in its area, but it also does cause inconsistency.

I haven't heard the heart transplant thing at all - would you mind letting me know where you heard that? I would like to ask my coordinators about it because I can't imagine how that would be true, and I can't find any evidence of it either online or in my e-mail.

We figured the cruise thing was the difference in funding in chapters but then we met a family from our chapter whose wish was approved at the same timebas my son's and they had a large family going for 2 weeks to Australia. I know this sounds like I'm trashing MaW and I'm not. They are an incredible organization and our trip ended up being the right one for our family. I always just wondered how they decided what was too expensive.

The heart transplant I found out through my online support group for kids with cardiomyopathy. It was from a family post transplant that was denied. Im not positive if they had done all the paperwork and were officially denied or if someone just told them that he wouldnt qualify. Another parent heard that they had just changed it. I couldn't imagine it was true and I would love to find out that they had been given incorrect information!

 

[AmberGreenawalt]

I posted this on the other thread, but I thought it deserved re-iterating here:

Not that it will make you guys feel any better, but MaW does not actually make that decision themselves - there's a form filled out by the child's doctor that lays out the medical eligibility criteria (I've never seen one for more than a second or so, so I can't speak to exactly what's on it) and asks if they believe the child meets those conditions. No one employed in a chapter office is a medical professional (at least in my experience - I've never heard of a 'Medical Advisor' and your chapter doesn't have one listed on the website - perhaps it's a third-party doctor they go to when there's questions of eligibility?), so they don't have the qualifications on what is a life-threatening condition or not - that's why it's left up to the doctor.

Now, why was there so much mis-communication between the office and you? That I can't answer. It sounds like it could have been handled much better on the chapter's end.

I hope whatever trip she goes on she has an absolutely fabulous time.

I find it very hard to believe that whatever Savannah's doctor's filled out on her forms would disqaulify her given that both her Mito Specialist and Pediatrician verbally told me that they submitted her and approved her elligibilty. I had never heard of a medical advirsor either but I was in proximity to the gal who wanted to be our familie's wish granter when she was on the phone with the Chapter's Wish Coordinator (she had better luck than me getting human!) and could hear the chapter representative tell her that is where our paper-work had been sent. I don't know why someone from the Chapter office could never pick up the phone to communicate with me directly....ever. Folks in the office on the fundraising side of things were incredibly responsive when I offered to bring our team of 100 plus walkers to their event to purchase food etc. I feel like sending a letter without ever returning a phone call was a terribly cowardly way to handle the situation. Especially given that I was NEVER pushy, combative, overbearing anything but inquisitive as to where we stood and wanted to know if someone could just give us an update.

 

[AmberGreenawalt]

Kid’s Wish Network just called and they would like to grant Savannah’s Wish!!!!

It’s been awhile since I stopped by to do an update. Now that Christmas is past and we have a quiet, rainy day before the chaos resumes I thought I would post an update and share some photos. I was in the middle of typing a post for this PTR when we got news that changes it!!!

My last update was to share that after months of waiting with very poor communication we received a letter in the mail that read, "Make A Wish of Central and Western NC has concluded that her [Savannah's] condition does not meet the medical qualifications for a wish. We regret that we are unable to fulfill a wish for him/her."

Our local United Mitochondrial Disease Foundation representative contacted me shortly after Savannah was denied to say that she was appalled by Make A Wish’s decision. It turns out that many other children in our area who have Mitochondrial Disease (some who are gravely ill!!) and have applied recently were also denied.

This prompted the UMDF to step in on our behalf. I can’t get into all the details because they have not become public yet but representatives from the UMDF met with representatives from Make A Wish, including the Medical Director and it turns out there is a gross lack of understanding on the part of MAW as to what Mitochondrial Disease involves and it’s prognosis. One of the leading Mito Specialists in the country is going to be working with MAW to educate them and develop a plan…but it’s going to take time.

The NC Chapter of Make A Wish web-site states "A child who is between the ages of 2 1/2 and 18, and who has been diagnosed with a life-threatening medical condition is eligible for a wish." We know that Mitochondrial Disease is certainly life-threatening. But it turns out that what MAW publicly states as their criteria is not actually what they go by. So I am hoping that in addition to gaining a better understanding of Mitochondrial Disease that they also have more transparency with the public so that parents like me don’t waste their time. Time is precious to us and we just can’t afford to expend energy for naught.

Meanwhile… It wasn’t long after we shared about Savannah’s MAW denial that I got a phone call from another organization called Kid’s Wish Network. They hearda about Savannah when they contacted the UMDF looking for patients to grant wishes for.

Kid’s Wish Network has a much more enlightened view of what’s considered “life-threatening.” In their brochure they write, “There are several differences between Kids Wish Network and other wish granting organizations. Kids Wish Network grants wishes to children with life threatening illnesses, which means that the condition does not have to be terminal; we want for our wish children to get better.” What’s more they go by the child's DOCTOR’S assessment and determinations not that of an outside advisor.

Brian and I had already went ahead and booked accommodations and started moving forward with planning but we would still very much welcome anything that makes her feel special and would appreciate any and all assistance in this pursuit so we went ahead and sent the application back. Once again Savannah’s doctor sent over her approvals and authorizations no problem.

It wasn’t long after that we got a letter saying Savannah had been approved and that a representative from Kid's Wish Network would contact us in 60-90 days. Today they called and spoke with Savannah and told her that they would be granting her wish!!!

As you know, if you’ve been following along, Brian and I were planning to take the kids no matter what the outcome during Sebastian and Siennah’ school winter break next February. We have reserved and paid for a hotel for the trip and made plans to give the kids tickets as their Christmas present from Santa. We chose to stay on property so that Savannah could go back to the room and nap each day since we wouldn't be able to use the wish lounges.

By the time we made our hotel reservations we could no longer get all of our nights at one location. It’s okay though. We’re calling it an adventure! We moved our park days and ADRs around so that we are going to the parks nearby to whatever our resort is for that day. We are staying 2 nights at Animal Kingdom Kidani Villas in a Studio, 4 nights at Board Walk Villas in a Studio and 3 nights at Bay Lake Tower in a one bedroom –that was the reservation we had previously made in hopes it would be a wish trip extension.

Kid’s Wish Network is going to give us five days worth of park tickets (they get them from Compassion), they will give us money for gas to drive down and back, they will put us up at a hotel for the night that we are driving down (we had planned to use Hilton Honors points and now won’t have to), they will cover three dinners and some spending money.

The way that Disney does their ticket pricing we're only going to end up saving just over $50 per person on tickets—Because the difference between the 9 day park hoppers we were going to buy and the 4 day park hoppers we will need to buy through AAA is only $$53.50 adults and $52.47 kids. For a total of $264.41 But that's $264.41 of savings that we can put toward Bibbity Boppity Boutique.

I don't know if Kid's WIsh Network gets the same kind of recognition in the parks as Make A Wish does. But seeing as how MAW is not granting to kids with Mitochondrial Disease at present any wish for her is better than no wish.

I know some would advise us just to wait until MAW gets their act together for mito and that financially this isn't the best wish (we already paid for accomodations vs. getting to stay at Give Kids the World) BUT it's been such a long process for us already and we were already going to do our best to make it happen anyway that the help (whether is "wasting" her wish" or not) is a blessing.

Now for some photos from Christmas!!!

I was resigned to it being totally up to *us* to make the trip a special one for our girl…And so…I spent every spare minute the last couple months to make some magic happen starting with how we revealed to the kids on Christmas morning that we’d be going to DISNEY WORLD. It hasn’t been the easiest as Savannah has been sick with pneumonia and needed to be hospitalized recently...

(Check out those glass slippers!)

Between Savannah sick and having the kids home on break id didn't leave me much opportunity to work on stuff. But it all came together for Christmas and I think it turned out to be a wonderful surprise for them on Christmas morning!

On Christmas Eve Santa left a letter explaining that he had a special jig saw puzzle made (I used Printer Studio) and that they need to put it together before opening up any other gifts.

The puzzle pieces were divided up into boxes.

The pieces with the wording were all inside one of the Mom and Dad boxes that I held back until the rest of the puzzle was almost all finished.

When put together the puzzle had a message from Santa that we're going to Disney February 22nd-March 4th!

Next the kids opened a big red box wrapped with red polka dot paper.

Inside were t-shirts that say, "I'm going to Disney," autograph books for each of them, an itinerary book (my magnum opus!), a countdown paper chain, a scrapbook for when we get back from Disney, and some fun extras like a Disney matching game, Disney Universe Wii game and some cute Minnie ears for the girls. And of course the tickets inside little boxes. (They actually contained tickets from a past trip as we are waiting to but the real one until Brian gets a bonus next year.)

The kids were SUPER DUPER EXCITED! And today, the day after Christmas to get the news that it is going to be a wish trip after all is icing on the cake!

And NOW I had better get to sewing!! I have so much to get done in 58 days.

 

[pigget74]

so excited for you guys!!!!!

 

[angel's momma]

Wonderful news

So sorry Savannah was sick & in hospital recently. Glad she's feeling better now.

Love your puzzle and all of the things you made.

 

[NEmel]

WOW!! How exciting! You are very creative and I LOVE all the Disney gifts. I bet the kids are super excited!!!

 

[Lilfoot93]

What wonderful news!! Love everything you made! So creative!

Jackie

 

[angel's momma]

 

[Jakentysmom]

Your post is close to my heart since I am a fellow mito mom!! My son was diagnosed with Kearns-Sayre Syndrome. It makes me sad that you were declined for Make A Wish. We just got the call today that we were accepted! So maybe it depends on your state? I have no idea but I know of lots of other mito families that have been accepted. I am so glad that you did get another company to sponsor her wish!!

 

[visitingapril09]

We have tons in common. Including many friends I believe. I am mom to a very special 14 year old who lives with a neuro-degenerative disease. He had his wish in 2004 and we have had a few disney trips since....for exactly the same reason you explained. It is our escape..for a very short time. IV pumps, bipap, sat monitors, feeding pumps...are still with us but dimmed by the joy and excitement of living in a 'fairy tale' land for a short time.

 

[girangel]

I've been following along on your PTR for a while and just thought I would say that I'm glad that Savannah and your family gets to go to Disney World.

Loved the Christmas pictures.

 

[angel's momma]

 

[AmberGreenawalt]

This time next week we will be in DISNEY WORLD!!!!!!

I can hardly believe it. We have been so busy that the time has just been flying by since Christmas. I am long overdue for an update. And with everything still left to do this won’t be much of one but I did want to pop in and say thank you for all the kind messages left here, share some photos and just generally blather on about our excitement (which is sky high!!!!)

Let’s see, where I last left off Kid’s Wish Network had called to say that they were granting Savannah’s wish. Not too long after that she got this sweet letter in the mail from them…

I also wanted to share some photos from an amazing event we had last month. The Charlotte Checkers did a spirit night for our team Saving Savannah at time Warner Cable Arena during one of their Friday night home games on January 25th.

The evening was a HUGE success and we raised over $5000 for the United Mitochondrial Disease Foundations. The Charlotte Checkers Charitable Foundation were AMAZING…AH-MAZING to work with!!!

They fell in love with our girl and in the end just really went out of thier way to make it a special evening for our family and friends. First of all they made this awareness video that they showed at all of their home games starting back in December.

Click here to see the Saving Savannah video.

It was also NASCAR Race night at the arena so they had Savannah signing autographs along with the race car drivers. Well, didn’t she just think this was the coolest thing ever. She loved signing her “name” on the photo of her that was in the program.

The is Savannah and NASCAR driver Regan Smith...

Savannah and I did the ceremonial puck toss along with drivers Joey Logano and Regan…

And Everyone who came got to join us down by the ice to watch the game and do the Chicken Dance.

But the most magical part of all was that after they played Savannah’s video at the game they surprised her with a visit from CINDERELLA!!!!!

Click here to see a video of Savannah's Cinderella Surprise.

I can not even begin to tell you what this meant to us. Savannah was able to spend over an hour with Cinderella talking and twirling and giggling and dancing. It was precious.

Cinderella brought Savannah some Cinderella themed gifts which included this light up dress

and even a gift card for Disney World that we’re putting toward Bibbity Bobbity Boutique since her actual wish is to be a princess too and it’s not something Kid’s Wish will do. It was a night we won't soon forget...

 

[AmberGreenawalt]

I have been a sewing madwoman for the past six months now. With the help of some amazingly talented friends it’s all come together in the last couple weeks. I’ve taken some photos on my phone so the photo quality is poor but the smiles are great so I figured I would go ahead and post them anyway. It’s far from the whole lot but this will give you an idea of the cuteness that is in store. Savannah is previewing some of the girl’s outfits for you…You might be able to tell that she too, is over the moon with excitement…

These are Kimono dresses for our dinner at Teppan Edo in Epcot's Japan...

These are for our Minnie/Mickey day. We'll be having breakfast at Chef Mickey's that morning (which also happens to be my birthday)...

These are for Hollywood Studios. It's our tradition to do an Incredibles set and get our photos taken with them...

These are for the Cinderella Dinner at 1900 Park Fare...

This is my shirt for that dinner...

These are Nemo Outfits for Animal Kingdom...

These are for Ohana (my birthday dinner!)...

This is for dinner at San Angel Inn in Epcot's Mexico pavillion. Check out that mini sombreo....

This is a Tinkerbelle set. My husband Brian will also be celebrating his birthday while we are there and this goes with something special that I have planned for our last night. But it's a surprise!...

These are skirts for our day at Islands of Adventure. I've made really cute Harry Potter themed shirts to match but they are not quite done yet...

A couple weeks ago Kids Wish Network let me know that they were going to send us to a Pirate Dinner. So natutally I "had" to make some Pirate themed outfits to go along with that. Here is one of the girl's dresses. I have since added a skull and crossbones applique to the bodice...

This is a very special dress made for Savannah by the incomparable Cathy Peckiconis. Cathy is an applique angel!!! I can't wait to show you more of the amazing shirts she made and more pictures of this dress where you can see the gorgeous appliques better. Savannah (and myself) are in love...

This adorable princess set was a team effort! I made the skirt and mailed it to Jeanne Hamling who added some beautiful princess cameo appliques and Cathy made the girls some beauitful princess appliqued shirts to match...

These are Beauty and the Beast shirts for Brian and I that go with this set...

I can't leave out our Prince. Sebastian is an incredible big brother! He is just as excited as the girls are to do the Bibbity Bobbity Boutique and be a part of making Savannah's wish come true. But there were no boy costumes...and honestly after all the sewing I have been doing I didn't want to tackle a complicated costume. It was slim pickin's for boy's Prince Charming costumes in the U.S. but the Disney Store U.K. had the perfect costume for 20 pounds...so about $30. I could not have bought the materials to make this costume (which included a sword) for that. I had my friend who lives in England purchase it and ship it over. It is perfect!!! And our handsome boy is so excited! We'll be having dinner in the castle this night...

I'll try to get some more pictures of the outfits up as I iron them this week.

 

[AmberGreenawalt]

There was some serious excitement in our house on the evening of Valentine’s Day as a UPS package arrived from Kid's Wish Network. It included some gifts for the kids (which as you can see from their reactions in these pics were a huge hit) and directions to our hotel for the way down, a check for gas and some meals and a certificate for a Pirate Dinner Adventure meal. Again the photo quality is poor but it definetly captures the joy!...

Packing is also well underway…

I am touched to my core by the friends, many of whom I met right here on the DIS Boards who are really making this trip a special one for Savannah and our family. In many ways that's even more meaningful than if it had been a wish organization that put it all together. Our friends and neighbors here in Charlotte too have rallied. Our friend who was Sebastian’s Wish Granter in 2008 and wanted so badly to be Savannah’s wish granter also, decided to go ahead and organize a send-off celebration as if she was anyway. She contacted another couple we are friends with who own a local family fun center with bowling and bounce houses and they graciously are putting together a great shing dig. On Tuesday night we will celebrate with some of the family, friends, doctors and therapists and teachers who have been a part of our girl’s journey. This wish trip may not be what we originally envisioned but just like the wild ride that God has taken us on these last five years there has been so. much. beauty in it. We have not left yet and already I we feel incredibly, incredibly blessed by this trip. My deepest gratitude goes out to each and every person who has been a part of making it happen.

 

[NEmel]

I love that she got to have so much fun at the hockey game! My boys and hubby would be so jealous they love Nascar! All of your hard work has paid off, your outfits are awesome!! You should be so proud. I also love your packing, I am very crazy about packing for trips so I really like your bins. I hope you have a fantastic trip and it is everything Savannah has dreamed of. We went to the pirates dinner show 2 years ago and really enjoyed it!

 

[Jakentysmom]

Those outfits are just awesome!!! I am so excited for everything you guys got!! That is just so cool. The hockey game sounds awesome. We are big hockey fans here. You are so organized...it is really going to help, im sure.

From one mito mom to another....I am so glad you guys got your wish through this other organization. You guys deserve it!!!