True2tRA Posted June 26, 2014 Share Posted June 26, 2014 Hello Huskerboarders, I've been a member here a long time now. Some of you I have met in person, many I have not. I've had many conversations here with you folks. Mostly football related, but anyone who has talked family with me, knows about my son. We have recently met a crossroads in our lives and felt it was time to act as parents, to make a decision on our sons future. A hard decision at that. We have decided to pick up our lives and move. The purpose of this move is for treatment purposes for my son. My son has been cancer free for a little over three years now, but as some of you may know, he deals with seizures on a daily basis. Although we have seen improvement over the years, they have not stopped. He was ten months old when they started, he is five years old now. We still see him seize, he still stops breathing, he still has sleepless nights. He still is a bit clumsy at times, he still can't speak. We want to give him the chance at a normal life. We feel as parents we owe him every chance. Landon takes over 20 different pills a day. He has had VNS surgery. He has tried the Ketogenic diet, ACTH injections.......nearly every possible treatment available in Nebraska. Thus, the move and why. Some of you I have seen comment about a new medicine called CBD oil. This is a non psychoactive oil derived from the cannabis plant. The side effects from this oil would be less harmful than any drug Landon has taken to this day. CBD oil has been shown to be highly effective in treating many things, doctors are finding, including seizures. I recommend viewing the documentaries by Sanjay Gupta "Weed", "Weed 2". These are very good documentaries and they explain the advances and the success of this type of treatment. So with this information and much discussion with people we know who have done this, we have decided to move to Colorado and try this for our son. We are in the early planning stages as of yet. The hard part of all this has been raising the funds to make this life changing move. We've talked about it for awhile, but to be honest with you, my families situation is tough sometimes. We get along okay, we make ends meet, but a move like this is a large challenge. The stresses of this move will be overbearing with the new home, new job, new environment, the cost of meds and the new treatments. We need to feel secure and safe, not go out there and fail. Our fear would be that the treatments would work and we would not be able to sustain a living out there, or for some reason have to withdraw him from the oil. We started a gofundme.com page and our story kind of caught fire. One Huskerboard member was one of the first to donate actually. A friend I've made over time here Huskerboard name Beanman. Our story was shared all over Facebook and we have been thrilled with the response from friends and strangers. Many people have reached out including our local newspaper. The Beatrice Daiky Sun did a front page article on my family today, and although I can't seem to link it here, it's easy to find. We also received phone calls from Channel 7 News and the Channel 8 news. I believe we will be doing an interview with one or both in the coming weeks. While my sons story is spreading, I decided to also come here and share it with you all. Not simply as an effort to raise funds, but to raise awareness and let you all know what's going on in our lives. Any donations are welcome, but we also just appreciate the support and kind words I've received from others on this site and others who have heard our story. We have raised 1405.00 dollars in six days on http://www.gofundme.com/agmitc , my sons gofundme donation page. We have also had people request other ways to donate so we have P.O. box 585, Beatrice, NE 68310 also to receive donations. I am opening my family's story to all of you, I hope people understand our mission and continue to support our goal which is to one day see my son live a seizure free life. Thank you all. 8 Quote Link to comment
Stumpy1 Posted June 26, 2014 Share Posted June 26, 2014 My prayers are with you and your family...My wife shared your link on FB if you don't mind. 1 Quote Link to comment
Redux Posted June 26, 2014 Share Posted June 26, 2014 Geeat to hear so many people can help out. Good luck to you and your family. 1 Quote Link to comment
True2tRA Posted June 26, 2014 Author Share Posted June 26, 2014 My prayers are with you and your family...My wife shared your link on FB if you don't mind. Absolutely I don't mind. Just spreading the knowledge of this treatment may help someone else. Who knows? Thanks for sharing. Quote Link to comment
NUance Posted June 26, 2014 Share Posted June 26, 2014 Prayers sent. And a few $$ too. Good luck with the treatment! 1 Quote Link to comment
True2tRA Posted June 27, 2014 Author Share Posted June 27, 2014 Prayers sent. And a few $$ too. Good luck with the treatment! Thank you my friend. Quote Link to comment
suh_fan93 Posted June 27, 2014 Share Posted June 27, 2014 Best of luck True. I think you are doing the right thing in moving so your son can lead a healthier life. God bless you guys. 1 Quote Link to comment
True2tRA Posted June 27, 2014 Author Share Posted June 27, 2014 Best of luck True. I think you are doing the right thing in moving so your son can lead a healthier life. God bless you guys. Thanks man. We are getting a lot of positive feedback from people. The positive far outweighs the negative. I pray it's the "right" thing. For us, it seems the only thing. We have tried everything. We have gotten some negative feedback, but just a few people. Folks just aren't real educated about this type of treatment yet. 1 Quote Link to comment
sd'sker Posted June 29, 2014 Share Posted June 29, 2014 it is disappointing that there have been some negative reactions. you got to do what is best for your family and people who disagree should just keep that to themselves. it is admirable what you and your family are doing for your son. i wish you the best. 1 Quote Link to comment
MLB 51 Posted June 29, 2014 Share Posted June 29, 2014 The only thing wrong with this is, you have to move to another state. Why don't they legalize this stuff? What ever I can do for you, just ask. Good luck my friend. Quote Link to comment
HUSKER 37 Posted June 29, 2014 Share Posted June 29, 2014 Where are you moving to? My Son and I would like to help out Quote Link to comment
MLB 51 Posted June 29, 2014 Share Posted June 29, 2014 Donated $50 to the cause. Wish I could help you more. I posted this on Facebook, asking for help. I hope my friends help out. If I have to give up everything I have to help, I will. Let me know bro. 1 Quote Link to comment
True2tRA Posted June 29, 2014 Author Share Posted June 29, 2014 it is disappointing that there have been some negative reactions. you got to do what is best for your family and people who disagree should just keep that to themselves. it is admirable what you and your family are doing for your son. i wish you the best. Thank you sir. Quote Link to comment
True2tRA Posted June 29, 2014 Author Share Posted June 29, 2014 Where are you moving to? My Son and I would like to help out We are looking at a town called Fountain, CO right now. Not far from Colorado Springs. We also looked at Peyton and Falcon. We just want to stay reasonably close to Colorado Springs, but not live in a huge city if we can avoid it. Quote Link to comment
True2tRA Posted June 29, 2014 Author Share Posted June 29, 2014 Donated $50 to the cause. Wish I could help you more. I posted this on Facebook, asking for help. I hope my friends help out. If I have to give up everything I have to help, I will. Let me know bro. Shoot man thats awesome. Thanks for your support. I also thank you for sharing it on Facebook. Spreading the word has been key to this goal, and people have been really good to us, whether they know us or not. Quote Link to comment
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