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Nick's Persuasive Essay Assignment (May 18, 2008)
Nick was assigned a persuasive essay in his fifth-grade Language Arts class. He chose to write about ALS. Here is his essay. Enjoy!

Make a Difference:
Join the Fight Against ALS

Picture this, a disease that kills the same amount of people in a year as if a plane of 215 people crashed every other week with no survivors. Now, you would think everyone would know about this disease and everyone would help. That is not true for ALS (amyotrophic lateral sclerosis). ALS kills around 5,600 people every year, but not everyone knows about it or helps. You should become an ALS advocate to help us fight this deadly disease.

My mom has ALS, a disease that weakens your muscles and eventually kills you. Approximately 5,600 people die with ALS in a year, and 5,600 get diagnosed with ALS. In the United States alone, 35,000 people have ALS at any given time. The pathetic thing is ALS has been around for about 140 years and we are barely closer to finding a cure than we were 140 years ago. Sure, people have donated money, spread the word, and given speeches, but we need more of all that. Those 5,600 people a year are depending on  it.

Now, some people might say, “Why bother? It’s not affecting me.” Ah, but you might get diagnosed with ALS sometime in your life. Also, someone you love might be going to have ALS sometime in the future. There’s no way to prevent ALS. It strikes men and women, young and old, all races and ethnicities. Help now, so if you do get ALS in the future, it might be treatable.

Another reason you should get involved is it’s easy to become an ALS advocate. There are many ways to become an ALS advocate and you can choose the one that best suits you. You could sell homemade cookies or treats for money for ALS (like my sister and I do). You could make a website to raise awareness. You could write letters to your Congressmen and women. You could volunteer to help at an ALS event. You could participate in a Walk for ALS. There’s something to match every interest, and there are activities throughout the year.

You should also help raise awareness for ALS because it feels good to help others. Helping other people is one of the best feelings in life, and you should be able to feel how good that is. Knowing you may be saving lives is the best feeling of all.

Another reason you should help is because ALS currently has no effective treatments. Other diseases like cancer, HIV, and diabetes (to name a few) are also deadly, but at least there is hope with the treatments invented to help with them. Meanwhile, ALS has no effective treatment or cure. Some cancer patients who have been treated are now cancer survivors. There are no ALS survivors. HIV treatments can give patients who are diagnosed today around 24 more years to live. ALS patients, on the other hand, have about 2 to 5 years on average from when they are diagnosed to when they die. Diabetics, with  proper treatment, can live a pretty close to normal life. People with ALS aren’t anywhere close to living normal lives as every muscle group fails. All of that doesn’t mean you shouldn’t help with other terrible diseases, because you should. But you should help with ALS, too.

In conclusion, there are many reasons to help in the fight against ALS. ALS has ruined thousands of families for over a century. It can happen to anyone – even you. Helping in the fight is easy and fun to do, and it leaves you feeling good inside. While advances have been made for fighting other diseases, ALS is stuck where it has always been: no treatment, no cure. You could make a difference in this important fight!

Excerpt from Nick’s School Journal (February 22, 2007)

Nick's assignment was to write about whatever in his life is his greatest joy. Here is what he wrote. Just to clarify: Nick really wanted to post this to; Aimee is embarrassed by such effusive praise and feels undeserving of it, but reluctantly agreed.

My Greatest Joy

My greatest joy is my mom.

She cares for me more than anyone else I know. I love my mom because she goes out of her way for me. She spends time making cookies with me and making awesome games for my birthday parties. 

She is letting me have a really cool life and have special vacations like going to Mexico twice and Europe once. She loves to see the world, and I’m glad she wants to share that with me. (I sometimes think she spoils me.)

My mom has a great sense of humor and doesn’t keep telling the same old jokes (over and over and over and over again) like another parent I know…

My mom is like a walking computer, and she is very patient helping me understand when I don’t get my homework. I appreciate how much time she spends with me when she could be doing something else. She makes homework fun by using baseball examples and Pokémon examples (two of my favorite hobbies)!

I love to cuddle with my mom. 

The least I could do was put her in the spotlight! My mom is so great she should get an A++++++++++++++ (should I keep on going?) for a grade on mothering. And yet she does so much for me and also has ALS! (Lou Gehrig’s disease) She struggles every day but still makes my life awesome!

My mom has made me so happy! Hopefully this will show her how much I care for her back! I hope she already know how I love her for making every second of my life happy. 

This is how much I love my mom.

Rachel's "Make It Happen" Project

Aimee and Rachel
Aimee's niece, Rachel, is working on a year-long project for school focused on making a difference in the world. She chose raising awareness about ALS as her project. Following are excerpts from an amazing presentation she presented as part of her ongoing project.

Why do I Care? 
I would have never known, cared, or had the idea for this presentation if it wasn’t for my Aunt Aimee being diagnosed with this disease. I care because she is struggling, weakening, and because she is dying. I care because of all the innocent, loved people that are dying because their bodies have given up on them. Their minds, their souls, them, they’re fine, perfect, normal. It is their bodies that are not. You are a person that is losing the ability to move, talk, and  swallow, but knows exactly what’s going on around you. It is like watching the world and knowing you soon will not be useful. You will be loved, cared for, and prayed for but will not be able to move, eat, or even talk. I care because Aimee is my aunt. She’s always been my favorite. She has always been fun and creative, the one that would invite us over for sleepovers, have fun birthday parties for my cousins, the aunt that would always have cool crafts for my brothers and me to do, and of course, the aunt that made the best, thickest frosting to put on her amazing sugar cookies. The aunt that is now dying at the age of 37 with 3 young kids that might never remember her and what an amazing mother they had.

Why Should You Care?
You should care because this disease is as bad as cancer yet the one and only difference is you all know what cancer is. You should care because anyone could get this disease at any time and if you like them, are friends with them, know them or love them, I think you would care if you knew they were dying. Dying because of something that with enough awareness, enough funding and enough help could possibly be no longer fatal. You should care because this a disease that not enough people know about to donate to, resulting in tons of people dying from it. You have to put yourself in the patient’s shoes. You are getting these symptoms. Even though you are afraid, you go to the doctor, you know it’s the right thing to do. So then that’s when the doctor tells you, I’m sorry, you have ALS. You then ask questions about what it is and then it hits you. The doctor pretty much just told you, I’m sorry, you are going to die.

Nick's WGN Kid of the Year Interview

Following is a link to the "Kid of the Year" interview Nick did on the Steve Cochran show January 7, 2007. Nick was recognized for his involvement in ALS fundraising and activism. Way to go, Nick!

Nick's WGN Interview

A Child's View on Life with ALS
by Nicholas Chamernik

My mom, Aimee Chamernik, has ALS. This has changed things for our whole family. I worry about things most other kids my age don’t have to worry about.  

For example, most kids probably don’t worry about their moms while they are at school.
But when I was in second grade, I was afraid mom would fall and get injured. Laurie, our social worker from the Les Turner ALS Foundation, helped us work with the school to let me hear mom’s voice by calling her at lunchtime every day. It made me feel relieved and able to relax, knowing mom was safe! 

Another example is that I’m sometimes scared to ask questions about ALS because I don’t want to hurt my mom’s feelings. Laurie, mom and I talked about how it’s fine to ask questions and that no question is off limits. I also found out that mom will always tell me the truth, even if it’s hard to talk about. That might sound scary, but it actually helps because I know that I’m not going to be lied to. Sometimes my imagination is worse than the truth.

Aimee and Nick
My mom and me
One time I asked mom about stepmoms. I was worried that if I ever have a stepmom, she might get rid of all my Pokémon stuff. But my mom helped me realize my dad would never be able to love or marry someone who didn’t love me and my brother and sister. It made me feel better to be able to talk about it. 

It makes me sad that mom can’t rollerblade like she used to. We had fun together while she skated and I rode my bike. But now I taught mom how to play chess and I’m teaching her about Pokémon. She still has a lot to learn! But we are having fun doing different activities. Just doing things together is the important part.

The future is what I worry about the most. One time I dreamed that my mom died, and the next day a cure for ALS was found. When I woke up, I felt happy that it was just a dream but worried that it could really happen. I wish there was a cure now. That’s why I’m trying to tell as many people as I can about ALS, so they will try to help.

Last year I asked for donations for ALS research instead of birthday presents. Since they didn’t find a cure yet, I’m doing that again this year. I want to do everything I can so other kids will never have to have a mom or dad with ALS!

This essay can be found in the Fall 2006 issue of ALS Today, the newsletter of the Les Turner ALS Foundation.