Friday, October 11, 2013

Dear Disney.

Dear Disney Corporation,

I'm writing to you today to extend my thoughts on the new disability access protocols. Please, don't stop reading. I do realize you are likely getting bombarded with thousands of letters talking of this new change to your company with many personal stories. But I want and think you need to know our story too. Please, I just ask that you read my words and really think about the impact on other families like mine.

My son, Wyatt, loved Walt Disney World in a way that you would have to witness to fully understand. Starting at 2 and 3 years old he would watch the free promotional DVDs over and over and over until they stopped working from so much use and abuse. He would later read books and vacation guides for fun, as he loved to imagine what the rides would feel like by reading their descriptions.

We were able to visit Disney World several times in his life. Wyatt was very, very sick. My son had Mitochondrial Disease. In 2012 he was nearing the end of his life and spending the rest of his time at home with hospice care. He asked and pleaded with us to take him to Disney World for several months. We said "no," until that October. I realized then I may regret not giving him this wish and felt he possibly did need to go there one more time. I talked with his medical team and we started planning to leave in just a few short weeks, as we didn't have time to wait. This would be no easy task to prepare for. We rented a large RV to travel to you from Pennsylvania. My son was unable to travel any other way. He needed space to lay down, electric to power the multiple pieces of equipment that he needed to stay alive and we needed space for his large amount of IV medicines and supplies. We reserved a room at the Polynesian Resort, one of his favorites. And it would have a castle view, as we weren't sure my son would be able to leave the hotel, but this way he could at least see the castle, the ferry boats and the water parade from our resort room.

My son's body was failing, but he wanted to visit Disney World one more time and we were determined to make that happen for him one way or another. 

Disney World for him was freedom. He could ride a large portion of the attractions and enjoy the surroundings and parades...in Disney World he can experience his surroundings like any other child there. That is invaluable! Disney World was the only place that he was able to experience life in that way. For families like mine, this is something that we strive for every single day but often struggle to obtain.

The day before we left to come to Disney World Wyatt became even more sick. But, with his doctor's blessing, we decided to continue with our plans for this last trip to Disney World. There was concern that he may die while we were there. I was scared, but I also wanted to honor our son's wishes to go on a vacation one more time.

We didn't come to your property with a "Wish" organization. Wyatt had a "wish trip" already a few years earlier, and going through the process of using an organization like this takes time that we didn't necessarily have.

When we visited for this last time in November 2012 we did utilize the Guest Assistance card. This card was the only way our family could experience the parks together. When I say it was the only way he could experience any of the park, I truly mean it. He was not only restricted by his physiscal health and the energy which it took from him, but his equipment needs provided their own time restrictions. Wyatt was requiring large amounts of oxygen, a ventilator and a pulse-ox machine to monitor his heart rate and oxygen saturations of his blood. The ventilator and the pulse-ox machine had a limited battery life. His oxygen requirements, being so high, greatly limited our time away from a high flow oxygen concentrator (that needs electricity to run). We had a window of 3 - 4 hours per day to work with before we would have to be back in our resort room to refill oxygen canisters with liquid oxygen and plug his vital machines into the electricity to recharge the batteries. At that time Wyatt would be fading and would need to rest his body and sleep for the next 20+ hours. My husband, Wyatt's father, and I would spend our days in the resort room administering IV medications and taking care of our son while he slept for those 20 hours. In the late afternoon we began to prepare to go to one of the parks later that evening. We began to wake Wyatt; this process took 1-2 hours as we filled oxygen canisters, made sure we had adequate amounts of his IV medicines and supplies that we would need and we unplugged his machines at the very last minute to ensure we were able to use every second of battery time that we could. We stayed on your property to ensure the easiest and fastest travel times to the parks and did everything in our own power to give us the most available time to experience the magic that is Disney World. Your Guest Assistance card at that time did just that for us too.

The evening that we arrived in Disney World Wyatt's eyes lit up, he threw his hands in the air and cheered from the back of the RV with a Pennsylvania license plate. His tubes and IV lines that extended from multiple areas of his body laid all around him. We made it...he made it there one more time. Our times in the park that week were some of the best he had in a very long time. Being there showed Wyatt he could still have fun even if his time with us was limited. He was able to ride multiple rides in the 3-4 hour window of time that we had to work with. He smiled again, we heard him laugh and he was able to have fun despite his body failing him.

My son died on September 27, 2013, just a few weeks ago. I witnessed Disney World giving my son something to live for. He fought to live every day of his life. And after that trip he came back with a little more hope. Wyatt knew he was dying and knew that we couldn't change that for him. But like any other young boy, he just wanted to have fun. Disney World, with the help of the Guest Assistance card, did just that for him that last time he visited.

While we visited Disney World we saw those who abused the system that you had in place for your visitors that needed more assistance. We witnessed it too. It would anger and frustrate me as a parent of a child who needed those services to watch another family misuse the system. It wasn't fair and those individuals will probably never fully comprehend my point of view. I understand why you made this change. But, I think you need to know that in doing so you also punished families like ours. Wyatt would not have been able to enjoy Disney World in the way that he did when we visited that last time if this new system was in place. It saddens me to think of another family that could be in our position with a child who loves Disney World with all their heart and needs to experience that Magic one last time. The family that will now miss out on the priceless memories of that last Disney World vacation with their child because the machines they require to survive do not allow them enough time to wait around for their assigned time to see an attraction or experience a ride.

I realize I'm just another Mother of a sick child that now died that is sharing her opinions and feelings on your new system that has caused outrage. I know I'm not the only one. But I want you to know, those memories that we were able to make in November 2012 during my family's last trip to Disney World together are priceless to me. I saw my son living despite the severity of his health. I saw my son and daughters having fun together like all the other siblings there in the parks. I could see my son again, the boy who was fading before our eyes. My son didn't die at Disney World like we feared, instead Disney World brought him back to life and gave him the fight he needed to keep going for a little while longer.

But I don't believe that would have been the case with your new system. I ask that you think about the rules that have been recently set into place and make adjustments for families like ours.

I may never need another Guest Assistance card or your services for park goers that need assistance. I have my memories of that very special trip that my son insisted on. Thank you for being there for our family and providing us the ability to create those sweet moments. But I know there are other families that will truly need the assistance that you once offered too. I sincerely hope that you are able to adjust your program to help them feel the magic and create the memories that they will one day cherish when their child is gone. 

Sincerely,
Ashley DeStephano



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The Disney Corporation recently changed their guest assistance program for those with disabilities or the park goers who need different accommodations within their parks. The changes that were made were rather significant and make a great impact on families like ours when visiting. I feel for the families that this will affect and felt the need to share our experience and concern for these changes.

I realize it may not make an impression or reach those who make these decisions about their services. I also realize the changes that were made were done so because there was a very real problem that needed solved. However, I feel they do need to know that adjustments to this new program are needed in certain situations. Perhaps not with a majority of their visiting families, but there may possibly be a family like ours who will arrive at their parks needing services that are not currently being provided. I do hope by sharing our experience it may help them to prepare for the needs of those potential visiting families.
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4 comments:

  1. Ashley, thank you for sharing your story. I am so glad Wyatt had that last experience at Disney, and I commend you for the tone of your post, explanatory yet very very candid.

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  2. Hi Ashley
    I applaud that you wrote them a letter. We can only hope that the right person sees it and changes are made. Im very upset about this change. It is sad for the families that need it and I am disturbed at the ones who abused it. We have a large family trip planned for January 14 and has been planned since before the changes. Im not sure what accommodations will be made for Faye. She cannot physically walk long distances or wait in long lines. When it's too hot, she becomes exhausted and literally sleeps the day away. I have concerns that she won't enjoy Disney as much as a physically abled child would. It breaks my heart to hear of these changes and hope that personal accommodations be made. When we were making the reservations for Disney, I spoke to a rep who said we did not need any medical documentation for "proof", but rest assured, I will be bringing a generic letter from our daughter's pedi stating how dire this need is. Thanks for sharing your perspective!!!

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