Tuesday, January 21, 2014

Dear Respected Legislators,


Our son, Otis, has hundreds of seizures a day and we believe you could help.
  
My wife, Kathy, and I were both born and raised in Kansas.  After college, we moved to New York City for a few years, but wanted to return home to Kansas to be closer to those we love, and raise a family.  


In June of 2011, Kathy gave birth to our only child, Otis. At 9 weeks old, Otis was diagnosed with a catastrophic form of epilepsy.  He has hundreds of seizures every day.  Due to this overwhelming seizure activity, he is developmentally disabled, can’t sit up, and has very limited communication skills.  Otis has tried loads of therapies and treatments (special diets, brain pacemaker, and countless drugs -- some with almost fatal side effects). Unfortunately, none of these drugs or treatments have worked to control Otis’ seizures.  


A year ago Otis’ team of neurologists from Cleveland Clinic Children’s and Children’s Mercy in Kansas City suggested a hemispherectomy (removing half of Otis’ brain).  They gave this a 50/50 chance to help control Otis’ seizures.  We decided to try all other options before the hemispherectomy.  That was a year ago…at present we’ve tried the other available options and they have all failed.  


We have one more option before surgery.  In the past year there have been lots of success stories involving children with intractable epilepsy using medical marijuana.  The specific strain that has been successful for this illness is in an oil/paste form to be taken with meals, and does not get users high.


We have a choice.  We can either have our son try another medicine, or cut out half of his brain.  That is an easy choice to make.  However, because of current laws, we will have to uproot our lives in order to give our son a chance at seizure freedom.


We are currently preparing to give up all we have here in Kansas to move to Colorado in order to give Otis chance at a better quality of life.  If the treatment fails we will come home to Kansas.  If it works…Otis won’t be allowed back in Kansas.  If we bring Otis back to Kansas with the medicine that helps his seizures, by law we could be arrested for drug trafficking.  
I believe that you would be doing a great service to the citizens of your state and the country at large if you not only supported but also rallied around the legalization of medical marijuana. Marijuana has countless medicinal purposes.  It is healing people across the border in Colorado and I know it can help people here in Kansas.  


Thank you for your service.
Sincerely,


Ryan Reed


     

10 comments:

  1. Do you have a petition or anything going specifically for Otis? I feel that it will be years if ever that Kansas would ever legalize it but maybe there is another way. For instance: honoring a prescription from any state no matter what the medicine is.

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  2. This man was my acting teacher. He loves his son so much. He had to quit his job for him. Otis deserves the best. Kansas needs to legalize it. Someone please read this is and make a change. Please.

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  3. Ryan Reed was also my acting teacher. He is a wonderful man and he and his family deserve to live near their friends and family as well as get the help for his son. Unfortunately I am now in the US navy. And now live across the country. A journey I would not have been able to take with out this wonderful man's push and support. Any who read this please bring it to your loved ones. Spread the knowledge of what could help children and those who are sick. Read more about this topic. Marijuana heals. Thank you. And if your reading this mr.reed I love you miss you and support you in everything you do

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  4. You have all my support! Let me know what I can do(:

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  5. Please add us on Facebook. We'd love to follow Otis on his journey with MMJ. Our daughter started with infantile spasms at just 6 weeks. Her story in on www.gofundme.com/hope4dani. Prayers for your family!

    https://www.facebook.com/val.smith.7165331

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  6. I look forward to following your blog, I love in ks and thought of moving for my son. He has similar seizures to Otis. We have tried everything and come Monday he's getting the V.N.S. implant if that doesn't work then I don't know what my options are. I have talked about relocating and I'm afraid that may be the only option left

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  7. I pray for your son and family! You are doing the right thing! As a mother and full supporter of MJ, I have studied the positive effects its having on people. Its an amazing plant! Please let me know if there is anything I can do to help your family.

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  8. Please know that I am praying for both of you and your sweet son, Otis. I have passed your Fox 4 news clip on to my good friend in Colorado. Her sons have been instrumental in the development of this treatment for young seizure patients.
    I hope to follow your blog and pray for good results for your precious son.
    Kyle Beyer
    Blue Springs, MO

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  9. My name is Jessica Kunkel and Ryan Reed like some of the others above was my acing and debate teacher. Currently I am a senior in high school I had Mr. Reed for three years and was very sad when he had to leave but everyone understands why he did. I just wanted to say we all support him in anything that will help Otis. We as a school loved him, he was our favorite teacher and a great friend to most of us. He is the reason I have confidence, before I met him I was very shy and couldn't speak in front of a class of kids but now I act in front of them and I give speeches with confidence. He is also one of the main reasons that I know I can do anything in the world that I set my mind to. He taught me that I am just as good as everyone else and that even though I may be scared everything will turn out just fine. He taught me how to debate and showed me that I can be good at it. I just wanted to say without him I wouldn't have made it this far. Mr. Reed deserves all the support he can get for Otis and I will always give him all that I can.

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