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Cass Boehm is a 6th grade student who has made it his life's ambition to increase understanding and awareness of Pediatric Chiari Malformation and raise money for much needed research. He wants kids to be able to go to the doctor, say they have Chiari Malformation and have the doctor know and understand the condition and that kids can be different from adults with Chiari. In his free time he plays baseball, golf, piano, and drums. He is also a huge Boston Red Sox fan.

Note: The views expressed below are solely those of the author. They do not represent the They do not represent the opinions of Conquer Pediatric Chiari (C&S Patient Education Foundation) or its employees. The author is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.

February 2010

January was a very rough month…so many headaches, loads of dizziness and lots of missed school! I was getting very frustrated…I HATE not feeling well. What is worse is going to school when you do not feel well… and trying to pretend that you do feel OK.

I did go and see a new neurosurgeon, and he thinks I have pressure on my brainstem, so he put me in a really annoying neck collar. It is weird that my headaches and dizziness get worse when I am in school. I think it is because I have to look down a lot. My mom and I have seen many neurosurgeons and told them about this, but none of them thought it was related to the Chiari. This doctor said he could see it on my MRI, if this is really true why didn’t the other doctors see it? My mom said she is going to talk to some other doctors and do some research.

We have had so much snow in Virginia, that we have not had school, which has been good for me… more snow tomorrow, but only 6-12 inches this time. We may be in school until July. Oh well.

Until March, Cass

January 2010

Happy New Year! I hope everyone had a great holiday season. I did not write in December. I was having really bad headaches. I tried bunches of medicine and nothing seemed to work completely. I did find a couple of medicines that took away most of the headache. I hate headaches! I cannot concentrate or go to school. All I want to do is lay very still in a very dark room. The good news is I am feeling better.

I am looking forward to 2010. I am planning to really focus on playing golf and getting good at the drums.

My mom and her friends have already started working on the gala. It is going to be October 15th in Washington, DC. I just know that this is going to be our best gala yet.

I need to think of other ways to raise awareness and money for research. The gala is great but we need to do more. There are way to many kids with Chiari that are searching for answers and relief from pain. We just need to keep talking about Chiari to anyone who will listen, and get the word out there.

I saw where the Today Show did a story on dogs with Chiari, maybe they will do one on kids. I think I will email them. Maybe everyone should send them an email.

Happy New Year, and I hope all the kids with Chiari have a pain-free, no surgery year in 2010!

Until February, Cass

November, 2009

It has been an interesting month… Several bad headaches, loads of dizziness, and lots of weird chest pains. What does it all mean? Chiari strikes again, I guess. It is so annoying because on the outside I look fine, so when I say I am not feeling well, I get looks like “yeah right”. Like I said at the gala, if they could only see what is going on inside of us…it is like a war zone! The confusing part for my parents is trying to figure when to go to the doctor and when it is just another day in the life of a kid with Chiari.

At least right now I am feeling better, and hoping it stays that way. My mom has been giving me lots of vitamin C and hand sanitizer every time I turn around… so I do not get the Swine Flu. She keeps looking for places for me to get the shot, but cannot find anywhere with H1N1 shots available. My sister had to go to the emergency room for a broken thumb, and she and my mom had to wear masks because so many people were sick. I hope all kids with Chairi stay well, because this flu does not look like fun.

Baseball is over, and it is on to golf. I am also busy playing the drums. I love playing the drums! My drum teacher is really cool, great at the drums and I am glad he is my teacher. In fact he is so good at the drums, it is kind of annoying…I have a long way to go to go to be as good as him. Maybe someday…

Until December, Cass

October 2009

WOW!!! The Pediatric Chairi Gala was great!! We had people come from all over the country to support us. I met so many new people with Chairi who had the same mission as me…all devoted to raising awareness and money for research. The gala was a huge success, and we raised a lot of money for research. It was very exciting to see so many people attending the gala and supporting our cause and learning a little about Chiari.

One of the highlights of the evening was meeting a girl named Allie Bradley from Stow Massachusetts. Allie has Chiari and her story is the exact reason we are doing this event. Allie suffered for 7 and ½ years before getting the correct diagnosis and some relief from her symptoms. It was great meeting her, hearing her story, and knowing that she finally is getting the correct treatment. You can watch her speech by clicking on this You Tube link -

http://www.youtube.com/watch?v=lH8KoHIxEv8

It was truly the best day of my life! I was so happy and I felt so good about myself, and what we were trying to accomplish. Even though it was my idea, it was really my mom and her amazing friends who put it all together! Hopefully next year’s gala will be even better and raise more money for research. We just need to all keep raising awareness about Chiari. How great would it be to really Conquer Chiari – now that would be a great day!

Until November,

Cass

September 2009

Well, it is back to school… and as you can imagine I am just as excited as any 12-year-old boy would be… I completed my Dragon training and I now have a really small laptop to take back and forth to school. Being back at school also starts back my weekly ritual of physical therapy; I have not gone as much this summer because I have been really busy. I go to PT for my legs, which I have problems with as a result of my Chiari. You are probably wondering like I do… how can something in my brain affect my legs, but in my case it does! My legs are constantly hurting, and PT helps. I also like my physical therapist a lot. She is interesting to talk to, and has lots of stories. In fact I think she looks forward to me coming because we have fun talking and it makes PT go a lot faster. I try to distract her, so we take more breaks, sometimes it works and sometimes it doesn’t.

This is a BIG month for Pediatric Chiari! On the 25^th of this month we are having the second Pediatric Chiari Gala event in Washington DC. I am hoping we will have lots of people attending and raise even more money than last year! My mom and her friends have been working hard planning everything, and I think it is going to be great. This year I get to introduce everyone during the program. If your parents are going, please let me know and I will look for them.

Please send any questions or comments you have for me to my email at cassboehm@aol.com (remember to cut and paste the email address if you want me to get the email it won’t work if you just click on the address).

Goodbye until October!

Cass

August, 2009

I can not believe that August is already here! Before I know it I will be back in school. My summer has been great and I have felt pretty well…not too many headaches, the dizziness has not been as frequent, and my fast heart beat has not seemed to bug me as much. I think my medicine must be working, well most of the time. I still have those occasional days where nothing seems to make me feel better. But like most of you, I have learned to live with it.

In a few weeks, I will be attending Dragon camp for the 3^rd time… No it is not what you think. The Dragon is a piece of software that allows me to write, by dictating into a microphone and then the words appear on my screen of my laptop. It is not that I am stupid; in fact I’d like to think I am exceptionally smart but I have a hard time forming the letters correctly when I write. For some reason, I just can not seem to make my hand and head work together. It is extremely annoying! The Dragon helps me write stories, so that people can read and understand them. Every year, I become a little better at using the software and the teacher always teaches me a few new tricks.

Every year when I go back to school, it always takes me some time to adjust. I have to get up earlier, the long bus ride, the really long school day, and having to bend my neck and look down so much. I find myself really dizzy, lots of headaches, and my heart beats really fast a lot. Do you feel like this in school too? The teachers and kids in the class think you are just making up excuses to get out of doing work. Little do they know! For the past 2 years I have missed 59 days one year and 47 days last year. I really hope this year is better.

I would love to hear from you. I have one question - What is school like for you? I will try to include some of your responses in next month’s blog. You can email me at cassboehm@aol.com

Until September, Cass

July, 2009

For me chiari has been a journey. No two days have been the same, but I am sure that’s how it is for many kids with Chiari. I was sitting at home one day after a trip to visit several new doctors. The trip was long and frustrating. I left without any new information or answers that helped me. Suddenly an idea popped into my head, what if we did something that would raise money for pediatric Chiari research?! Not really thinking about how much money we would really need I thought lemonade stands would be a fun way to raise money - but my mom informed me that the amount of money we would need was much bigger than a lemonade stand. So, my mom, being the best mom in the world, and all of her friends, being the best friends in the world, turned my dream a reality. The reality is an annual gala event! I mean - How great would it be to really conquer pediatric chiari?

Chiari is a tough thing to live with. I can’t tell you how many days I’ve just felt horrible and searched for the off switch. As many of you know Chiari is invisible to most people…and I am sure many of you, like me, have had friends, family, teachers and doctors that have really understood Chiari and helped you through. However, it is the ones that do not understand that we need to make realize that Chiari is a REAL condition!

My journey with Chiari is far from over…everyday I (with the help of my parents) continue to search for answers to help me feel better. My biggest hope is that with research, our journeys can be a lot shorter and less traumatic!

Until next month, Cass