Loved By Others. ..Giving Me Strength To Fight Stiff Person Syndrome x


My sweet little Mollie-Jai,  brought this home from school today.  She was ever so excited because her school and teachers are going to help make me better,  her little face lit up as if was Christmas morning,  bless her little heart.
I must admit , I cried out of sheer happiness.  I guess I was over whelmed by such loving support.  It has been a very long time since I have been able to go to my two youngest tot’s school,  not even able to make it in my wheelchair,  without coursing horrendous spasms.
My goodness,  I have missed out on so much with my tot’s because of this life shattering disease.  I have missed so many precious moments,  school Christmas concerts,  sports days,  parent/ teacher consultations,  Eisteddfods and so much more.  I will never be able to turn back time to relieve these moments,  that are such precious memories.
Stiff Person Syndrome has stolen all these precious moments that I should have shared with my beautiful tot’s.  Such a cruel illness,  snatching my life away,  taking away my tot’s mummy. ..
… has no right to do so.

I would like to thank Victoria Primary School Abersychan,  for showing their love and support. Mollie-Jai can’t wait for her school to make me better.  She said one of her friends looked at my photo today and gave here a cuddle because he said I looked sick and was sad for my sweet princess.

Why did Stiff Person Syndrome rare it’s ugly head?  It has broken me by stealing my tot’s away from me. I literally am unable to do anything with them. Even their sweet voices,  laughter and movement affects my body……triggering yet another spasm.  So Jay closes the door,  cocoons me in silence,  my tot’s out of reach,  always on the other side of the door.  My poor sweet tot’s don’t deserve to have to live tis way. I try and hide my tears,  I lay here crying alone because of my tot’s and what they have lost,  the fear in their little eyes when they see me spasm,  fall over when fighting to wall walk a little.  I try and shelter my three tot’s as much as I can from them seeing the horror of SPS. …..which in turn draws a bigger divide between us. I am segregated,  isolated from my sweet,  precious family.

I was astonished to see this from Mollie-Jai’s and Dylan s school this afternoon.  What a beautiful gesture for there school to do for me….for us as a family.
So I would like to say a loving,  sincere thankyou to the head teacher,  all members of staff,  all parents, and children of Victoria Primary School,  for caring about me and my family so much

Victoria Primary School. … showed me a ray of hope today.  Thankyou with all my heart and soul xxx


4 thoughts on “Loved By Others. ..Giving Me Strength To Fight Stiff Person Syndrome x

  1. Reading this hun with tears running down my face..we all love you and want to help you..yr a very special lady.
    Love you lots like jelly tots


    • hey sweetheart, im sorry i made you feel sad. but i guess this sorrow is my reality.
      i love you to my darling, lets just hope that one day, i will be physically standing by your side once more.
      love you lots like lollipops xxxx


  2. U r such an amazin women. I haven’t stopped thinking about u all day. Ur family r amazing too. I have donated and will continue to do so, I will keep sharing ur story untill enough money is raised, ur beatiful children n husband need u. N we can ke this happen. Ive asked if we can also do a fund raising day at the school n will do my best with help from others to rsise as much as we can. My nan has donated money which I will send in tomorrow, my lil grls r bringing money of thier own to help u get better… We can do this. !! All our love, Rosemary, Chris, Chloe, Lucy + Alfie Fish!


    • Hi Rosemary
      your message brought tears to my eyes. your love, care and compassion is appreciated beyond words. Not only do you have a beautiful kind heart, but also your beautiful family. I feel honoured and privileged to have you standing by my side. its so amazing that that your sweet little princesses want to help make me better too, by using their own money. i am absolutely astounded by the love that your family are showing towards my illness. you are all so very, very kind and your positivity and determination to help shines through. I wish i could say more than thank you, but truly from the depth of my soul this message will remain sketched upon my heart today and always. Please give your little girls a special hug from me, and tell them that they are extremely special to me for giving such a precious gift
      thank you so very, very much for your donations. none of this would be possible without people like you and you precious family
      much love and lots of hugs
      Nerri xxx


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s