True2tRA
Banned
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.
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.
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