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Thread: 16 y.o. questions about a cure

  1. #1

    16 y.o. questions about a cure

    Hello. My 16 year old has a complete T5-6 SCI post 3 years now. He does great really. We have the usual problems of spasms, neuro pain, and UTI's and he basically handles it all with great tolerance and grace. We are fortunate that as a family we are all very close and helpful.

    Ben had his rehab at Columbus Children's Hospital and we feel as a 13 y.o. he had the best possible.

    The last couple of weeks he has been asking many questions about research and clinical trials etc. I will admit my mind set these past 3 years are adapting and getting him in college etc. To be independent and happy etc.
    And I know that is a big part of his future.

    My question is how do I give him the support he needs at this time to learn about research and what that means for him now or in the future. Does he qualify for any studies at this time and how does one know?
    Right now I think school is a full schedule for him and work is a full schedule for me and his dad too.

    I have gotten so much support just reading other post these past couple of years and I thank you all.
    Ben's Mom Cindy

  2. #2
    Hi Bens Mom,

    There is a Cure forum dedicated to all the latest info regarding clinical trials
    and research.

    http://sci.rutgers.edu/forum/forumdi...aysprune=&f=32

    There is a biomedical corporation named "Geron" who might start clinical
    trials after the first of the year. But they are only using acutes at this
    point.

    Here is their website and their spinal cord injury program.

    http://www.geron.com/products/produc...ordinjury.aspx

  3. #3
    From what I remember in my past, he can get full funding for school! You or he, are welcome to PM me, ask here, or even visit, if it would help. I'm T4/5 16 years post.
    Andrew

  4. #4
    Hi, Cindy (Ben's Mom), we must have just missed you at Children's. Jimmy left Children's in August 2005 with a complete T-4, T-5 injury as well. He is 18 now, working and getting ready for college. Not so interested in "the cure" though.

    Jimmy's Mom

  5. #5
    He's young so I can imagine that the thought of a cure is something he really looks at especially with all the advances in research these days. The trick is to not let him get fixated on only that. Help him to understand all of the opportunities he still has. Hope is always a good thing but we still need to live each day. School is a great thing and it will provide him with the best options, (cure or not). Good luck and don't give up.

  6. #6
    Focus on school and getting a good education for now. You do not want to fixate on something that may not even happen.
    Dave
    C5/C6 complete
    http://www.davegrotzinger.com
    http://www.daves-webdesign.com

    "I knew all the rules but the rules did not know me guaranteed..." - Eddie Vedder

  7. #7
    I expect he can focus on both, jmo. You are wise to keep your eye on the closer ball, though. After good rehab, good education is said to be the single best indicator of future happiness.

    Remind him every person has 3 components that have to be more or less balanced: Physical, intellectual, spiritual (or maybe emotional, depending on how you look at it.) The problem w/ sci is it skews this balance so bad. We have to make an effort to re-balance it.

    I think those that DO balance these 3 things are the most "successful sci's", i.e. the happiest.

    It's ok for him to hope, and to research to see what's going on. Assure him that there are people trying to make it happen, every day. Regular people, researchers, even the odd politician. He can relax until he graduates. Then I hope he jumps aboard the cure advocacy train LOL.

    Thee only studies for chronic sci right now might be in the realm of physical training. I got into one called STAT at the VA, they suspended me over a treadmill with a PT at each foot, and tried to retrain my spinal cord to walk. I built a lot of muscle, but it was FAR from a cure. Everything out there right now is far from a cure.

    Good luck! How blessed you all are to have each other!

  8. #8
    Did want to thank for the responses given to me. I always am hoping we are at least on the right track through this uncharted territory.

    Oh I have high expectations for Ben!!! Poor kid he is from a family of over achievers and workaholics. I will be relieved when high school is but a memory for him. I believe the world of being adult is much kinder than all the adolescent dramas.

    Oh heck, he misses just being a normal kid. And I kind of miss that sometimes too.
    But life goes on. Guess I believe Faith Family and Friends.

  9. #9
    Give your son hope whenever you can. When I hear some promising information about research, I tell my son about it. He's so busy with his schoolwork and living his life that he doen't have time to keep up on research. But that hope is there, in the back of his mind, and it gives him the strength to move forward in his life.

    My son became paralyzed when he was 22. It still breaks me up. I really feel for you that your son is so young and had to go through that.

  10. #10
    My son too is 16 and I do my best to keep him updated on studies that are going on. We watched that PBS Independent Lens show together afew months ago about the research being done by a doctor in Chicago with a SCI daughter and we talked about it. My son has a very scientific mind so it helped him to see what kind of work goes into finding a cure.

    I try not to fixate on a possible cure, but I do find it helps him to mention any studies or updates once in a while.

    Another thing that helps is we have picked about 4 research centers that we donate to as we can. Even knowing that we send $20 now and then makes him feel like he is a part of the process and that seems to help. I think him just knowing that there are people out there who are working on it has helped and it allows him to focus on moving forward and having a rich and full life.

    Best wishes.
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

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