Comments on: Jordans speech receives standing ovation http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/ Just another WordPress weblog Tue, 10 Aug 2010 10:58:00 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Lucie http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-612 Lucie Thu, 22 Jul 2010 10:03:14 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-612 Dear Jordan and all family, I am from Czech republic and I have seen a document about you at TV yesterday. I am so glad that now I can see you so lucky and alive! You are the bravest young man I know. Thank you for that. Lucie Dear Jordan and all family, I am from Czech republic and I have seen a document about you at TV yesterday. I am so glad that now I can see you so lucky and alive! You are the bravest young man I know. Thank you for that. Lucie

]]> By: Thomas http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-607 Thomas Tue, 20 Jul 2010 15:12:03 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-607 This is the second time I've been to your blog just randomly. Hope you're still blowing everyone away with your intelligence and humour! I'm 27 and suffered from depression for years, meeting a good friend of mine James, who had spinal muscular atrophy helped change my outlook. Like you he had made the decision to do everything he could possibly do to embrace life to the fullest. By the time I met him he was in a full length wheelchair, unable to sit up. He could dance by rocking (We both liked rock so it was all he needed anyway) but he could only really use a few fingers to control his computer (Using a system he designed himself) he was a computer programmer, a web designer and was about to set up a film company with me before a nasty lung infection took him from us only two years ago. He was the nicest guy I've ever met, considerate and fun to chat to. He lived twice the lifespan he'd been given by medicine and was earning more money than me, a man with no physical issues. Knowing him changed me, his mindset passed on to me. I can't thank him but I can thank you for being someone like him. Someone whose lust for life is so infectious it changes those you meet for the better. This is the second time I’ve been to your blog just randomly. Hope you’re still blowing everyone away with your intelligence and humour!

I’m 27 and suffered from depression for years, meeting a good friend of mine James, who had spinal muscular atrophy helped change my outlook. Like you he had made the decision to do everything he could possibly do to embrace life to the fullest. By the time I met him he was in a full length wheelchair, unable to sit up. He could dance by rocking (We both liked rock so it was all he needed anyway) but he could only really use a few fingers to control his computer (Using a system he designed himself) he was a computer programmer, a web designer and was about to set up a film company with me before a nasty lung infection took him from us only two years ago. He was the nicest guy I’ve ever met, considerate and fun to chat to. He lived twice the lifespan he’d been given by medicine and was earning more money than me, a man with no physical issues. Knowing him changed me, his mindset passed on to me. I can’t thank him but I can thank you for being someone like him. Someone whose lust for life is so infectious it changes those you meet for the better.

]]> By: Luna, 15, USA http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-443 Luna, 15, USA Fri, 21 Aug 2009 17:03:17 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-443 Dear Jordan, I just wanted to say that you are without a doubt one of the bravest and influential people I've ever met. I've read the Blog & about all the places and things you've seen and done, and the wonderful attitude you've kept with you- I love how in every picture you're wearing that dazzling smile and your eyes are so full of light. As for the people you mentioned who would rather stare than smile, shame on them. Most people have no idea what they're missing out on. I think you're lightyears ahead of most people. You're such an inspiration, please always keep this with you!! :0) Love, Love, triple love, Luna Dear Jordan,
I just wanted to say that you are without a doubt one of the bravest and influential people I’ve ever met. I’ve read the Blog & about all the places and things you’ve seen and done, and the wonderful attitude you’ve kept with you- I love how in every picture you’re wearing that dazzling smile and your eyes are so full of light.
As for the people you mentioned who would rather stare than smile, shame on them. Most people have no idea what they’re missing out on.
I think you’re lightyears ahead of most people.

You’re such an inspiration, please always keep this with you!! :0)
Love, Love, triple love,
Luna

]]> By: Petronella Nortje http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-426 Petronella Nortje Sat, 04 Jul 2009 17:01:32 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-426 Dear Jordan, you are just such a brave young and special man. I sit here crying because you remind me so much of my son Colin who I lost on the 20 October 2005. He was diagnosed with proteus syndrome. He would have said that you are a "cool guy"! May God bless you and your family. If you ever want to visit South Africa, then contact me and you can stay with us and me and my family will show you our beautiful country - at our expense! Regards Petronella Nortje Dear Jordan, you are just such a brave young and special man. I sit here crying because you remind me so much of my son Colin who I lost on the 20 October 2005. He was diagnosed with proteus syndrome. He would have said that you are a “cool guy”! May God bless you and your family. If you ever want to visit South Africa, then contact me and you can stay with us and me and my family will show you our beautiful country – at our expense! Regards Petronella Nortje

]]> By: Clinton http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-277 Clinton Mon, 23 Mar 2009 11:08:00 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-277 Mate hi there from Down Under. If you eveer want to come out to Australia you can come and visit us in Brisbane. Hope all is well with you and your family. Me I am a 49 year dad with a 15 year old daughter and a 10 year old son. My wife is caring for me at present as I am in plaster as I have had two ligaments tears in my foot. Playing cricket would you believe. My son Zeke and I are into cars and I have a collection of around 10 vintage cars in various conditons. My daughter is into the Jonas Brothers even though Zeke and I think they are just OK. Hope to see another new blog from you soon, Bye for now Clinton Kempnich Mate hi there from Down Under.

If you eveer want to come out to Australia you can come and visit us in Brisbane. Hope all is well with you and your family. Me I am a 49 year dad with a 15 year old daughter and a 10 year old son. My wife is caring for me at present as I am in plaster as I have had two ligaments tears in my foot. Playing cricket would you believe. My son Zeke and I are into cars and I have a collection of around 10 vintage cars in various conditons. My daughter is into the Jonas Brothers even though Zeke and I think they are just OK.

Hope to see another new blog from you soon,

Bye for now
Clinton Kempnich

]]> By: Alan Emery http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-153 Alan Emery Thu, 29 Jan 2009 02:10:55 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-153 Jordan you Rock man! This is so well written. Of course none of us reading it can pretend to know what you are going through. But each of us has been through something where we want to forget our circumstance, just like you wrote about sometimes forgetting you have proteus. I am cheering for you Jordan. You are an inspirational young man, and frankly a pretty decent writer already! Jordan you Rock man! This is so well written. Of course none of us reading it can pretend to know what you are going through. But each of us has been through something where we want to forget our circumstance, just like you wrote about sometimes forgetting you have proteus.

I am cheering for you Jordan. You are an inspirational young man, and frankly a pretty decent writer already!

]]> By: Monica http://www.proteus-syndrome.org.uk/blog/2009/01/jordans-speech-receives-standing-ovation/comment-page-1/#comment-137 Monica Thu, 22 Jan 2009 10:04:23 +0000 http://www.proteus-syndrome.org.uk/blog/?p=72#comment-137 Hello, my name is monica from Israel. What a lovely boy Jordan is! Thank you very much for the update on his progress. I have seen the documentary a few months ago, and since then, I think of Jordan so often. It's great to hear that he and his family are doing well, about his prospects, to read his inspirational speech, to sort of be able to share his holidays, for example, and some of his life through this wonderful blog. You are such a great and brave family. I wish you all the best, with lots of love, Monica. (35 years old, originally from Argentina, psychologist, mom). Hello, my name is monica from Israel. What a lovely boy Jordan is! Thank you very much for the update on his progress. I have seen the documentary a few months ago, and since then, I think of Jordan so often. It’s great to hear that he and his family are doing well, about his prospects, to read his inspirational speech, to sort of be able to share his holidays, for example, and some of his life through this wonderful blog. You are such a great and brave family. I wish you all the best, with lots of love, Monica. (35 years old, originally from Argentina, psychologist, mom).

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