Still waiting

Is it good for me, all this reading? I keep looking at the Society’s website, even though I practically know it by heart now. What do I expect? Some new miracle cure to pop up? I don’t know. I guess on some level I’m thinking knowledge is power. The more I know, the more I can do about it. Only I can’t. I can’t do anything right now and that is what defeating me.

2 thoughts on “Still waiting

  1. kevin willetts

    My name is Kevin and I am the grandfather (the children call me Pampa) of a recently diagnosed MPS 2 sufferer Rupert (Ru) [Ru-bear}. I was put onto your blog by my daughter Naomi (Ru-bear’s mother) and the bits I have read so far have made me cry a lot as your Pudding reminds me so much of Rupert. I find myself keep coming back to read more because in some strange way i feel comforted. I love my little grandson so much, I cannot imagine life without him.


    1. HuntersMum

      Thank you so much, Kevin. Comments like this mean so much to me, as it makes it worthwhile that I started the blog. I’m glad that my own experience can help others find comfort. I’m sure you will continue to get cuddles from your Ru-bear for many years to come. xx


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