There hanging in there my older brother is hanging on and being very strong and my little brothers still mobile so that's something to be happy about my moms also being very strong with the whole situation thanks for asking hows your son doing?
Chris, Quinten is doing well. We are approaching the 7 year anniversary of Quinten's diagnoses, so life is about to get crazy busy with our annual/semi annual appointments. He has really been struggling with being board lately. He does not like to go out in the cold, and it is a lot of work to get all bundled up to go outside (not to mention trying to move around in all of those clothes). I need to post, to get some ideas. How is Henry doing?
Chris: It is great to get connected. I have 5 kids: Meredith (14), HENRY (11-DMD); Thomas (8); Jack (5); and Madeleine (2). Our Henry was diagnosed at 18 months. He is now a 6th grader. He got a power wheelchair 6 months ago and also has a service dog. Life is very busy and dynamic here in Tallahassee. I look forward to sharing stories and support.
Hi Chris, It isn't available over the counter in the US, as far as I know, but it is available online through the US. Idebenone is the generic name of Catena. Below are the links I have regarding Idebenone. Joshua is 9, weighs 57lbs, and takes 500mg. We order from Smart Powder since they offer the 500mg pill. I hope this helps.
Hi Chris, nice to meet you. I am so sorry to hear of Henry's diagnosis. Sounds like you have a wonderful family. Please know that their is more hope for Henry at this time than I have ever witnessed in my life. When my son was diagnosed, much of what is now in Clinical Trails were just dreams and theories. Nothing was in the pipeline for cures, and treatments to extend the quality of life for our boys were not known or developed. Please feel free to contact me any time if I can be of support or assistance to you and your family.
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