Epilepsy Awareness Day at Disneyland: An Interview with Mrs. Fagans and her daughter Nicole
By Brianna Phillips and Elizabeth Sexton
What was your experience with the convention? What did you learn?
For me, I learned that there’s different parts of the brain that function differently and your brain can Sometimes malfunction And with that it can sometimes be a problem.
How was the overall experience. How were the people there?
Nicole and Mrs. Fagans:
It was really was amazing.
Yeah, it’s hard to describe because it was really fantastic.
And now I’ll back this up a bit. Nicole was diagnosed with epilepsy right before her seventh birthday. I don’t how much you know about epilepsy or anything else like that. Epilepsy is basically seizures, and everybody sees your type as different, as different as the nose on your face and everything. So basically, what ends up happening is like, basically the brain goes into overdrive and it kind of stop things from happening. So Nicky in her case, can still be walking down the hall and going through her normal day, but may not remember a lot of things that are going on because she’s having seizures. You think seizures were just dropping and having convulsions and everything, and sometimes it can be a blank stare into space or something like that. Just a stop of activity. Which is the type that Nicole has. So sometimes when teachers or somebody thinks she might be daydreaming, it’s not. She’s actually having a seizure. Up to hundreds of them in a day we try to control them by medication. Everything else like that. And Nicky also used to have the convulsive type as well, but outgrew that and now as an almost adult, has actually developed another type of seizure. So the way this whole convention and everything started is because Nicole has been an advocate for so long for epilepsy, kids with epilepsy and stuff like that. And if it weren’t for a teacher noticing her, having the epilepsy, having seizures, knowing it herself, we don’t know how it would have taken Nicole to be actually be diagnosed with epilepsy. So we’re very grateful for the teacher that noticed that she was actually having them back in first grade. Nikki, even at the age of ten, went up in front of the governor in New Jersey who happened to be Chris Christie at the time and spoke to the task force for epilepsy and people that have epilepsy. And basically said if you educate my educators about what I go through, then they helped me a lot more. And with that being said that following year the teacher’s convention down in Atlantic City, the epilepsy foundation of New Jersey not only had a table but actually held classes is to educate teachers and we’re told that it was one of the first filled up classes that they have each year because they are seeing a growing number of people that are having seizures. Now, just because a person has a
seizure doesn’t necessarily mean they have epilepsy. Epilepsy is when you have a series of them and there’s really no explanation as to why they’re having a series of them. Some have triggers and stuff like that going on and everything else like that.
It’s not fun.
Basically, one in twenty people is going to experience a seizure in their life. So that’s really a realistic number.
She also attends a camp during the summer called Camp Achieve and the staff here last year, wore purple on Wednesdays in April and the money that we raised from everybody who put a dollar in the jar when they wore purple was able to pay for a child to go camp for for a week and they basically teach the kids how to live with their epilepsy. It’s an amazing camp.
We never hear no at that camp we do rock climbing to archery. We do horseback riding sometimes, if we can. We have snack attack, we make our food, you’d be surprised at how many kids do not know how to make their own food. We pretty much go over all the bases and we go swimming at the end of the day just to relax. Then, we go in cabins because that’s where we stay. We’re not allowed to have electronics and a lot of kids would freak out. It’s kind of funny because our cabin brought board games and we would just play board games and the younger cabins would come over to our cabin and it got to the point where we had all the girls in our cabin. And we were just a big card game and it was so funny.
So anyway, the way the whole convention came about is the EADDL holds a convention in California in Anaheim at Disneyland at one of the resorts and I think this was a sixth year that they’ve done it. There’s a foundation called Danny Did Foundation that is based out of Chicago, and a friend of mine came to me and said, “Hey, have you ever heard of this convention?” and I’m like “ Yeah, God, you know, I love to take Nikki. I’ve always wanted to take her.” They have all kinds of different neurologist there, all different kinds companies and they have two days of this convention, and then it’s a day in Disneyland. So she came to me and she was like, “Well, you know, you have heard of the Danny Did Foundation?” I said No, they said, “Well, Danny is a young child who actually died. It’s a thing called SUDEP (Sudden Unexplained Death in Epilepsy) and Danny was a toddler and basically had a seizure and died. It’s unfortunately, you know, realistic to us that something like this can happen with that and this foundation was founded in his memory. So what they do is they raise money. They have all kinds of activities that they do, like I said they’re located in Chicago and what they did was they reached out to families throughout the country for a grant that basically paid thirteen hundred dollars for the families to be able to go to this convention. I’m basically found out about it only days before the deadlines but it was a one page form that I had to fill out. And I just emailed it over to them and they basically told us it was just simple questions, like how long she’s had the seizures and just a very brief why we wouldn’t want to go out there. And, to be perfectly honest with you, we never would have had an opportunity to Anaheim if it wasn’t for this. So we actually found out days after her seventeenth birthday that she was one of the ones that was chosen to go. And we had to turn around, make our plans and and it was quite a process. We’re able to travel, but still have a full day of the convention and everything.
So the convention itself was huge, and it was actually one whole room in the Disneyland Hotel. So purple is very big with epilepsy and the reason why November was so important to have this is that November is Epilepsy Awareness Month. So they take advantage of that. And their whole theme behind the convention is basically too paint Disney purple. So that’s exactly what they want to do. They wanted to get as many people into Disney and over three thousand people attended.
November fifth and six was a convention and November seventh was the day we painted Disney purple. In the convention you would just go around from table to table, and they had one of the universities there that talked about IEP plans in order to transition the kids into adulthood. There were also all kinds of neurologists from different aspects of neurology and what was really cool too was that they service dogs and alert bracelets. They also got to make their own flip books, which, you know it was It was pretty cool.
There was a company that was called rare bear, and they make comfort bears for the kids. I mean, they really made the families and the kids feel you like a million bucks. At one point the afternoon, she ended up meeting the gentlemen who ran the convention who name was Brad. I mean, it was quite an honor just to even be chosen to go and to have her going experience. We’ve actually been in touch with a couple of families since.
There’s so many different types of epilepsy and so many different things that these kinds go through and this convention really brought things in perspective as to caretakers, what’s available out there and various other things. And Nikki just recently had a visit with CHOP and there are various test that she’s gonna be going through and we’re very optimistic and we actually think its going to better her quality of life and what she will be able to do in the future.
It was kind of cool seeing people that you knew there.
Yeah, that was weird, too. When you have your epilepsy family, it’s really weird how you just run into different people because of this and friendships that are formed because of it. Like the experience was just it was totally amazing, and once in a lifetime, we’re very fortunate that the Danny Did Foundation chose us to go out there, and it’s something I never would’ve been able to just on my own, so I’m very grateful to them. It was only Nicole and I. She has three other siblings, and it was only the two of us that went so well made, even a little more special. And walking around the park and seeing all the different purple shirts was a lot of fun. Yeah, once in a lifetime and we were actually the furthest ever go from anywhere in the country. It was amazing. A lot of people, it was almost overwhelming. I’m kind of glad it was two days because it was a lot of information to get at once. It was really cool, meeting other families and knowing what they go through, aswell and sometimes as caregivers our best is talking with the other families to find out how they handle their children’s epilepsy and different things that they do to help out with it. She’s been battling it for Mom
almost eleven years now. She has a permanent brain damage from but you know, she still functions. She will be able to go off, get married, have kids, all that kind of stuff and everything.
It’s funny because they already have next year’s convention two thousand nineteen already planned. I’d love to go back. I would go back in a heartbeat.
It was unbelievable.
Yeah, It really was amazing. It was really cool to meet all the families and to find out their experiences.