Movie night for Ricky

I want you to try and do something, that I'm going to tell you right now, is absolutely impossible. I want you to try and imagine starting to lose your sight and being blind by the time you were a first grader. I want you to try and picture yourself being athletic and strong, even taking a wrestling opponent out in 30 seconds because you accidentally gave them a bloody nose. You're strong, you're funny, you're like every other kid except you can't see. But on top of all of that, I want you to imagine living your life knowing everything you learn and accomplish, at some point, you will no longer be able to do.


 This is something I've tried to picture in my mind over the last month and it is impossible to do. A month ago, I met Ricky. Ricky is 18 years old, he's 5'9, doesn't like getting up early for school, loves rap, hip hop, and all sorts of other popular music, like his peers. He's an extreme movie fanatic and has an awesome sense of humor. He likes to talk about the ladies and loves Siri's weird responses. What I just described to you is a typical 18 year old boy. Except Ricky is now struggling to walk and has to use a wheel chair because he is losing his strength. Every time he meets someone new, he has to repeat himself, 5 or 6 times, hoping they will understand what he is trying to say because he is losing the muscles that control his lip movements. He loves M&Ms and eats them a lot, knowing that one day, in the too near future, he will not be able to eat because his muscles won't allow him to swallow. He will be blind, unable to walk, on a feeding tube, and have absolutely no movement or ability to communicate his wants or needs to anyone. He has Batten disease. Families typically find out this diagnosis when their children start losing their vision at a very young age.

Ricky baking with me!

When I met Ricky, I was shocked by the strength of this boy, physically and emotionally. He took my arm and still practiced walking everyday. He tells jokes, even though it takes us awhile to get them. He is such an amazing kid and everyday I've known him he's made me laugh. Knowing all of this about your life and still having the strength to even get up and go to school everyday is unbelievable. 

It may seem silly to some people but Ricky's always wanted to be a ticket-taker at a movie theater. Of course, my first job was a busser at a small little restaurant, so when you really think about your first job, for a movie buff, this would be pretty awesome. Ricky will never be able to have that job. But I wanted him to experience it, only if just one night. 

I figured there was no chance of anyone getting back to me, but I thought the least I could do is reach out to a movie theater to see if he could have that opportunity. Not only did the owner of Penn Cinema, Mr. Penn Ketchum, get back to me but on Monday, November 9th,  he is allowing Ricky to be a ticket-taker for the evening from 6:30-7:30. He is giving Ricky a uniform to get the full experience. Ricky was also so excited for the "Goosebumps" movie and Mr. Ketchum added in a special showing, at 7:45pm, so Ricky could watch it right after his "shift" is over. 

Not only am I truly amazed by Ricky and his entire family, who show such love and more strength on a daily basis than I can ever imagine, but am so happy to know there are people, even owners of huge businesses, that will go out of their way to do something kind for another person.  

I know this post may seem sad and depressing but honestly, when you truly think about it, it should make you look at your life in a more positive way. Ricky and his family have changed my life in the short month that I've known them. When I want to scream because my boyfriend doesn't understand the difference between holiday decorative towels and dish towels, I try to take a deep breath (even though as I'm writing this, I'm getting a little annoyed) and remember that there are people in this world that are experiencing much tougher times than I am. I have met the most inspirational, wonderful people this month and I am so thankful for that. Be happy, positive, and thankful for everything you have and do something nice for someone when you can. 

So with all that being said, if you live in the Lancaster area, come support Ricky and his dream of being a ticket-taker this Monday night at Penn Cinema. You can go see any movie  just as long as you go through Ricky's line and say hello! Remember to be patient with us, as it will be our first night on the job! :) Also, feel free to join us at the special showing of Goosebumps! Please support Penn Cinema for going out of their way to make this happen for Ricky! If you aren't in the Lancaster area, please still share this post to help support Batten Disease awareness. Thank you all so much! I hope to see you all Monday!!!!



                          For more information on Batten Disease visit www.bdsra.org