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 Sebastians 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 IVE 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 Sebastians 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 doctors 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 dont 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 Savannahs 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 Sebastians 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 Savannahs paperwork had been passed on to a Medical Advisor. That was the last we heard before getting a letter stating that she didnt 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 Savannahs 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. Im 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 wont 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.
Im sad that Savannah wont 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 dont 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. Ill 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]