Feature Article: KIDS SPEAK UP to the US Congress about epilepsy
Sam Magda is 11 years old and is in the 6th grade. She will tell you that she loves to take photographs of cherry buds on warm afternoons and that she writes for the school newspaper. She will tell you what it is like to live with Epilepsy and she will even tell you the exact day when her seizures started, November 13, 2008. What she won’t tell you outright is that she is an outspoken, intelligent, A student, who was chosen to represent the state of New Jersey for a program called Kids Speak Up because of her eloquence, her curiosity and her drive.
Kids Speak Up is a program designed to bring children with Epilepsy from all over the country to Washington DC to speak to Congress and the press about their hopes for the future of epilepsy treatment and care. It serves as a reminder for policy makers that their decisions are affecting real people, some of who are under the age of 12.
We spoke to Sam and her mother two weeks before her trip to DC and have recorded her thoughts about the event below.
How did you learn about Kids Speak Up?
Mom: Andrea [Racioppi] from the Epilepsy Foundation of New Jersey asked if Sam would be interested in the trip after meeting her at the Epilepsy Foundation’s 30th Anniversary celebration. She saw that Sam was not bashful when she was the only kid who stepped forward to cut the cake while the rest of the kids stepped back.
S: A few days later on December 3rd-I remember because it was right after my friend’s Frankie’s birthday- Mom asked me, how would you like to go to DC? I said, sure I don’t mind.
What did it feel like being chosen as a representative for Kids Speak Up?
At first I was like, am I dreaming?? Because sometimes I have weird dreams and then my Mom said: nope you aren’t dreaming, and I was like “ok! Sure I’ll go!”
Have you ever been to DC before?
No, this is my first 1st trip to DC and I really want to see the Smithsonian. But there is a little weight on me now though on this trip.
How come? Are you nervous?
Kinda nervous. I have never spoken to Congress before.
What are you planning to speak to Congress about?
I want to tell them to make the Epilepsy medicine cheaper because it is really expensive and I see my family has to make sacrifices. And I want to tell them about what it is like to have Epilepsy. Epilepsy isn’t one of those things you have to worry about every day and you only have to worry if you aren’t good about taking your medicine. I would also like to tell them to advise the medicine companies to have new flavors.
What are you hoping Congress will learn from Kids Speak Up?
I hope they will say, “hmm. We will think about that,” and then I will see the bill and be happy, do a little jig in the middle of CVS pharmacy. I don’t know how to Irish dance but still…
What are you most excited about during your trip to DC?
The party! I have been to sleepovers and birthday parties, but I have never been to one with kids other than my relatives. I am excited to meet other kids with epilepsy and just to meet people outside of New Jersey. I only have one friend with Epilepsy and it is a different type than mine.
Do you talk to friends about Epilepsy?
Lately I talk more about it because of the trip and because I have a team for the Walk. I give them updates on my team, tell them how much we have raised and about our website. So far we have raised $2400.
What hopes do you have for yourself in the future? Do you know what you want to be when you grow up?
I don’t know what I want to be, but lately I want to be a [film] director. I read a book that I think would be perfect to turn into a movie, even though it is for younger readers. It is called the Juliet Club. I am also on the newspaper at school and am keeping a journal during the trip to make into an article for my school.
If you had one thing to say to other children with Epilepsy around the world what would it be?
Focus on today and don’t think about tomorrow because today is trying to get your attention and trying to tell you all these cool things. If you are thinking about tomorrow you might miss the opportunity to see something really cool and learn about something today. So live in the moment.
We caught up with Sam after the walk (March 27, 2011) to hear reflections about her experience:
How was your trip to DC?
It was awesome. First we went to the Smithsonian and went to a party and the next day we had the walk. We saw a guy with kites from America’s Got Talent and we saw Miss Oregon and Miss New Jersey. It was an accident, we didn’t mean to see them, but we did. “Woohoo!” We also made a mini movie about the trip that we will put on the web.
What was it like speaking to Congress?
It was scary because it was like, are they going to like me? I asked them if they could lower the price of medicine and if they could keep the programs where epilepsy foundation comes to schools. They said, “hmm ok.”
I hope they make the changes, but they might not.
What lessons did you take away from the trip?
Probably one of the things I learned was: don’t be scared and just do it. The other thing is: don’t drink too much sprite or you will get sick.
What advice would you have for others who want to come to the walk next year?
It was an awesome time! But don’t use the porter potties there and wear comfortable shoes
What was one moment that was the most fun?
Right after the walk when we had lunch and I was able to show Andrea and Jenna [of the Epilepsy Foundation of New Jersey] all of the things we saw in the Smithsonian.
I really want to go next year and hopefully we can talk to other people and tell them how fun it was so they will want to come too.
To learn more about Kids Speak Up, The Magda Family, or The Epilepsy Foundation of New Jersey take a look at the websites below.
Jodi Kanter, B.A.
http://www.epilepsyfoundation.org/ksu/
http://www.efnj.com/
http://giving.epilepsyfoundation.org/site/TR?team_id=20591&fr_id=1880&pg=team
