About Me

My soul purpose for creating this blog……well it is for a number of reasons, but i only have one wish……and that is to have the gift of time, the chance to live.

my name is Lindsay, or Nerri as my friends call me. i am 33 years old, a university graduate, married my childhood sweetheart, and we share the three most amazingly precious children together 🙂 I  was living my dream, until my life was shattered to pieces when i woke on the morning 7th of June 2009 

I am “one in a million”, diagnosed with a rare autoimmune disease called Stiff Person Syndrome. I am rapidly deteriorating to the point that without much needed treatment, i am going to die

i would like to share my personal story, in the hope that i can raise awareness of how debilitating, dangerous and life threatening this horrendous illness is for me, This is my attempt , out of sheer desperation, to somehow get my voice heard, before it is to late.

10 thoughts on “About Me

  1. It’s such a cruel thing your going through.. Let alone what uncle Jas and the 3 beautiful children are going through. You will fight this.. Your story will be heard and you will get your transplant that you desperately need. I know that your not a person who likes to show desperation, but times like this, it’s the world you need to turn to. Stay strong, like you have been. You’ll get through this. Lots of hugs. Love you x x x

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    • Sweet Jordan
      You are so beautiful my darling, your words of empathy and love. Your uncle Jay is an incredible man, he has sacrificed everything for me and our tot’s.
      Hunnie if you ever feel you would like to come and have a coffee with me, and cwtch up on the bed. Please know you are always welcome.
      I see you have became a beautiful young lady now…..with a very beautiful soul
      I love you sweetie
      Nerri
      xxx

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    • my goodness Bia , what an amazing , kind heart you have, its very heart warming indeed.
      The stem sell transplant procedure that i hope very much to have done in Denver if i can generate the money need via fundraising. for this particular procedure , a donor is not required, but i sincerely am very humbled by your kindness.
      thank you for your encouraging words , you truly have made me feel blessed to read such a heart warming message
      Much love
      Nerri xxx

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  2. As a Welshman who has lived in America for a long time, I know only too well how American hospitals seek to make as much money as possible out of every medical patient. Therefore I would recommend that you contact Dr Harold Atkins at the Ottowa Hospital Research Institute in Canada (hatkins@ohri.ca), who has performed a stem cell transplant for two patients with Stiff Person Syndrome (one five tears ago and one two years ago) who have remained symptom-free since their operations. Please refer to the following two website addresses for more information. I apologise if you have already researched these avenues.
    http://edition.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/
    http://www.ohri.ca/profiles/atkins.asp
    I send you my best wishes for your battle with this horrendous disease.

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    • Thank you Chris, but yes i have already researched DR Atkins. He has recently completed his third HSCT with a good friend of mine, and she is also doing very well indeed 🙂
      However, through my research , i discovered that i need to be a Canadian resident for at least 2 years to
      qualify. So Dr Atkins is not a possible option. But on the positive side, Dr Atkins follows Dr Nash’s protocol , this is the consultant that i am hoping will help me in Denver. He is currently conducting a HSCT for another SPS friend of mine, and assessing a second. So im sure i will be in good hands 🙂

      Thank you for caring enough to write to me
      much love
      Nerri/ Lindsay xxx

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  3. Hello, I discovered your blog via a link in welshviews.com while reading about Colombia. I want to wish you success in your quest to regain health. As an aside, I just read two books, Grain Brain and Wheat Belly, both of which have helped my wife and me regain our health. Grain Brain talks about numerous kinds of neurological symptoms and perhaps your symptoms could benefit from the removal of gluten and high-carbs and the inclusion of high-fat and high-protein in your diet. Just a thought, do what you wish with the information. Again, may you find an answer to your suffering. Fred

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    • thank you for being so kind Fred and informing me with this information.
      Its wonderful that yourself and your wife have benefited from such changes in your life, and im very happy for you indeed.
      It really is very lovely of you to take the time to write to me and wish me well along my journey
      much love
      Nerri xxx

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