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Old 08-31-2012, 01:57 PM   #91
alyssaswish
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I LOVE your customs for Disney! The birthday party was so cute! I know the kids had so much fun.
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Old 09-06-2012, 12:03 AM   #92
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Amber, I am hoping you hear from MAW very soon!!

Your posts have made me cry today!! I can't believe it's been 4 years since I first "met" you! You guys are such a special family and I have loved looking at all the pictures of your Disney trips. I can't believe how the kids have grown.

Thank you for sharing with us! I hope you get good news about your trip very soon.

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Old 09-06-2012, 09:53 AM   #93
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It will all come together . . . the pieces are just taking a little longer to fall into place than we'd like
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Old 09-11-2012, 11:11 PM   #94
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Amazing!

What an amazing family! I've only made it as far as Sebastian's wish trip photos but, my goodness, do you ever have adorable kiddos!

I've laughed and cried and I'm not even halfway through this thread!
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Old 09-12-2012, 07:57 AM   #95
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Amber... Any news yet?

I've been hoping that you all hear something soon... It will all come together!

I am also hoping to meet up with you and your wonderful family while we are down there.

D~
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Old 09-27-2012, 05:52 PM   #96
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I just wanted to see if there was any updates.... for good luck!

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Old 10-02-2012, 09:30 AM   #97
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Just checking in...hope no news is good news! Can't wait to hear an update from you!
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Old 10-15-2012, 09:18 AM   #98
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I have a four year old little one with Mito as well. We just got our dates for Disney...Jan 3-9... Our maw chapter was way behind too we were told!
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Old 10-17-2012, 07:37 PM   #99
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Wondering if you guys have gotten any news?

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Old 10-26-2012, 09:45 AM   #100
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Disheartening News From Make A Wish

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."

There is so much I am still having a hard time processing about this. In all honesty, Savannah has, in her little life, been through just as much, if not MORE than her big brother Sebastian who qualified for a wish because of his battle with Osteoclastoma in 2008. All of Sebastian’s referral stuff was handled through the Blume Hematology and Oncology clinic which Make A Wish admittedly deals with all the time.

Honestly the disparity between the cancer world and mito world sometimes makes my stomach turn. Mitochondrial Disease is a life-long battle. Kids with cancer have a chance at remission. I'm not putting down cancer because I know what they go through I’VE HAD ONE! Cancer automatically qualifies a child for wish…apparently Mitochondrial Disease (having just as many children affected and an equally grim prognosis) does not. 80% of children with Mitochondrial Disease will not survive their teenage years.

We did Sebastian’s wish trip when we considered him to be healthy and by and large “in the clear”---as a sort of celebration for that really. Savannah has been in and out of the hospital and doctor’s offices since birth…the beginning of her story played on here on the DIS Boards in fact. Savannah continues to be affected by mitochondrial disease, not to as extreme an extent as she has been at the present moment but it will continue to be a part of her life as long as there is no cure. Just last week I had to pick her up from school because she was lethargic and unresponsive.

Conscious of the prognosis for anyone with Mitochondrial Disease we wanted to do something for her NOW…while she is healthy enough to enjoy it and because she clearly has something she wants to wish for as she is utterly enamored with Princesses and weddings and we don’t truly know if she will get to have a real wedding someday. Just a few days ago a beautiful young bride named Leslie who has Mitochondrial Disease died.

The reality is just because Savannah is "stable" in her disease today does not mean she will be tomorrow. It is a progressive disease with no cure. Make A Wish asked that we contact them again if Savannah’s condition takes a turn for the worse. How the heck do they expect her to go when she is worse? There's no way Savannah could go on a trip mid-crisis. I am so disappointed for Savannah and for all the other children denied for simply not being visibly sick enough.

The criteria for the NC Chapter of Make A Wish 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." ---I don't know what they think that means. Or how it is that Savannah does not qualify by this criteria.

I had been encouraged last Christmas when a letter arrived from the Make A Wish Foundation for the annual giving campaign that featured the story of a ten year old boy with Mitochondrial Disease. I thought that maybe some parity was starting to be seen between kids with mito and other life threatening illnesses. In our neighborhood another child with the exact same diagnosis as Savannah had his wish granted through MAW.

We started the process for Savannah back in June. Not one but TWO of her doctors sent in complete paperwork for her though MAW claimed for months to be waiting on three missing signatures even though her doctors repeatedly let Make A Wish Know that they were willing to provide whatever information they needed. I talked with them both on multiple occasions when we had Savannah in to see them and both were so gung ho and excited to make a wish happen for Savannah.

One of Sebastian’s wish granters requested to be matched with our family again… meaning that someone was ready, waiting and willing to provide the volunteer man hours needed to make a wish happen for Savannah.

For months the two of us tried to talk to someone at Make A Wish just to see where we were in the wish granting process…NO ONE would return ours calls. Or worse they would email saying they were going to call….and then never call. The would-be wish granter did get through to an actual human (not voicemail) and was told that Savannah’s paperwork had been passed on to a Medical Advisor. That was the last we heard before getting a letter stating that she didn’t qualify.

We never had a chance to tell anyone at Make A Wish what Savannah actually wanted to wish for...A trip to Disney where we could make her a “wedding day princess”. Her wish was honestly a relatively simple one for the organization. I know for a fact they handle THOUSANDS just like it every year. We just wanted to be able to stay at Give Kids the World. This costs Make A Wish $750. We were not even wanting airfare (transportation being the biggest cost footed by the wish granting organization in a wish process) as we were perfectly happy to drive our own van down to Disney. We reserved and paid for what we hoped would be an extension to Savannah’s wish trip knowing that families only stay at Give Kids the World 5-6 nights.

I am so thankful for all the Make A Wish did for our family in 2008. Truly. Through the years our family has supported the organization financially through many of their fundraisers including having a team in the Walk for Wishes every year since it started in our city. We had planned on having our Sebastian miss his soccer tournament for the Walk for Wishes on November 10th. Now that I know that a whole group of deserving kids in the mito community is not served through them...I just don't know. I’m still sorting out my feelings. Since sharing our news with our friends in the mito community many have written to me letting me know that their children (some with HUGE medical complications) have been denied as well. There is obviously still an enormous lack in awareness and understanding about this devastating disease.

Since getting this news we have purchased more DVC points through a friend of a friend. Since we won’t be able to use the Wish Lounges for rest we needed to stay close enough to the parks to be able to go back in the middle of the day and let Savannah nap. At four years old she still naps several hours a day. We could not get all the nights we needed at one resort so we are booked at three. (Two nights in a studio at Animal Kingdom Villas, 4 nights in a studio at Board Walk and 3 nights at a one-bedroom at Bay Lake). We will make the tickets the kids’ Christmas present from Santa again this year. They are so good about this and not asking for toys.

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]
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Old 10-26-2012, 09:53 AM   #101
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Quote:
Originally Posted by AmberGreenawalt View Post
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!
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Old 10-26-2012, 10:23 AM   #102
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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!
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Old 10-26-2012, 01:10 PM   #103
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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.
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Old 10-26-2012, 01:37 PM   #104
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Quote:
Originally Posted by kritter47 View Post
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!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
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Old 10-26-2012, 04:00 PM   #105
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Quote:
Originally Posted by kritter47 View Post
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.
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