Aiden's Journey

One Little Boy's Battle with Dravet Syndrome



Posted by Nicole on August 21, 2011 at 7:50 PM

I’ve started and stopped writing this entry about 10 times in the past week. How do you put into words something so complex as taking a child on a Make A Wish trip? I suppose we start at the beginning. Bear with me.

When Aiden was first diagnosed I got to know a mom with a little girl who also had Dravet syndrome. She was about 6 months older than Aiden and was diagnosed as an infant, which really just means that the family had had almost 3 years to digest this awful thing called Dravet, while we were still “newbies.”

When the mom mentioned her daughter was going to Disney on her Make A Wish trip in the winter, I was a little surprised. Sure, she had a feeding tube, and sure, she wore orthotics, and sure, she had seizures and couldn’t speak, but did that mean she was dying? I was where many of you are today: unintentionally oblivious to the various organizations around to help sick children and their families.

The mom didn’t really explain Make A Wish to me, but one comment stuck with me: “I know _____ is a little young and may not remember this when she is 20, but two things made us apply now. 1. She has 1/5 less of a chance of making it to 20 than typical children. With our kids any day could be ‘the one.’ 2. This syndrome takes so much away from our family that we need to go now, while we still ARE a family. (She had a teenage son and an elementary aged son in addition.”

Over the years I heard of various Dravet kids getting their “Wish,” from Disney trips to therapy rooms in the basement, to swimming with dolphins, to skiing and seeing snow. As I explored the Foundation, I learned that Make A Wish is for kids with life threatening diseases, even if they are not “dying,” as we all tend to think of Wish kids. And their wishes are truly about things money can’t buy – they encourage people to apply regardless of their financial situation. More on that later.

We struggled with the idea for a long time. Wish kids were, in our eyes, sicker than Aiden. They battled cancer, and surgeries, and extensive stays in the hospital. They were disabled, to be sure. But sometime in the past 2 years our vision of Aiden has morphed into a more realistic one than that of the perfect baby we brought home from the hospital. It’s not that we’ve lost hope for him, but we’ve come to accept that the things he goes through are not one-off events or unfortunate experiences he’ll outgrow. They invade his life, smothering his every experience with electrical shocks and a fog of seizure-induced confusion, hours lost sleeping after seizures or days lost roaming the hospitals for various appointments.

Andy refused to use our disabled parking pass for a long time and it was sort of a window into his path to acceptance of Aiden’s reality. While he’s hesitant to even use Aiden’s wheelchair (preferring, instead, to use the baby jogger our nearly 6 year old boy has clearly outgrown), we’re both starting to come to terms with this seemingly simple fact: Our son is disabled. I know – It sounds so simple to say, but try uttering your own child’s name in that sentence and tell me it doesn’t catch just a little bit as it comes out of your mouth.

When I mentioned I thought it might be time to apply for Aiden’s Wish, since he’s happy, stable enough to be away from a hospital for a bit, and is cognitively “there” enough to understand what’s going on after so many years in a complete fog, Andy didn’t disagree. That’s when I knew the time was right. Not just for Aiden, but for all of us. Earlier would have left us confused about where Aiden stood (and Aiden confused about what the heck was going on), and later might have been too late for his brothers (and us) to accept what was happening without embarrassment or shame. After all, at 9 ½, Owen is not going to enjoy the same things as his 5 ½ year old brother for too much longer, and pretty soon he’ll distance himself from him a bit.

It was with very mixed emotions that I filled out the online application. You see, I didn’t quite know what to say. How do you explain to someone all that comes with this syndrome in 100 words or less? How do you tell them you have so much hope for his future while being realistic about what he’ll be able to do?

Imagine my surprise when the phone rang the very next day. Thinking it would be another hospital scheduler booking, confirming, or canceling an appointment, I answered uninterestedly, but quickly changed my tune when our Wish coordinator explained how the process would work. They conduct a phone interview, send our paperwork to our neurologist, pediatricians, and the others on Aiden’s team to confirm diagnosis, prognosis, and any other medically relevant info, and then Aiden goes to their Wish Center to make his very own Wish.

Knowing nothing is ever this easy I started to pull out all of Aiden’s doctor contact info. “No need – we know who they are and will take care of all of that for you.” And that is the first time I started to cry. Just sat down on the floor and let the tears flow. I can’t explain what it feels like to have someone doing something amazingly generous for you, and to have such an intimate understanding of the families that they take care of the paperwork for you. I am still in awe of the class Make A Wish showed in every step of the process. The next day (less than 36 hours after my initial online application), she called back to say the doctors had agreed Aiden should qualify as a Wish kid and they had all of the paperwork to begin the Wish process and would likely have the Wish ready in the next 3 months. 3 months?? I thought these things took way longer!

The next few days brought endless brainstorming: What would Aiden wish for if he could conceive of things he doesn’t have direct experience with? To meet Toby Keith (his favorite singer)? To see Optimus Prime in person? (Do the Transformers even do that?) To have a therapy room built in our basement? We thought of so many adventures and things he’d love, but in the end only one seemed to capture all of them at the same time: Disney. He had no idea what it is, so they relied heavily on us as his parents, but truly, he could meet/see/do just about everything he loves in DisneyWorld, and though the trip would only be a short period in his life, his love of pictures would keep the memories alive for years to come. (Well, that and the fact that if Toby Keith wanted to sing any other song than “How do you like me now,” Aiden would have been so distraught it could have ended quite poorly.)

Fast forward a few weeks through Make A Wish of Colorado researching, booking, confirming, and everything else planning a vacation entails, right down to notifying the airline of the service dog’s presence, and we were booked and ready to go. I could tell Andy was still struggling with Aiden’s qualification as a Make A Wish kid, until they sent us to Barney Live a week before our trip and Aiden had a tonic clonic seizure right there in the Make A Wish suite for all to see, just from the excitement. I’m pretty sure that experience made him feel better about this whole thing!

All that was left was to go to Disney World, and that is where the true adventure starts.

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