On the first of July after various blood tests and months of waiting and worrying, Danny was diagnosed with Mucopolysaccharidosis II (Hunters). I have never felt so helpless in my life as I read about this progressive and life-limiting condition. One of the first websites I came across was that of the MPS Society, and they have been so helpful and supportive.
Thankfully, Danny has now started on enzyme replacement therapy which can mitigate many of the phsyical problems that MPS brings. But there is no current cure, and treatment doesn't at present prevent any degeneration of the brain. As well as supporting families like ours who are learning to live with this condition, the MPS Society raise money for research, and campaign for those who are not yet lucky enough to have treatment agreed by the NHS.
As most people probably know, I don't 'do' sport, but what I can do is sacrifice my one vanity - my curly hair. I'm not quite sure what Danny himself will make of this, but he loves fiddling with my hair so I'll be sure to save him some! This will probably be done on 1st November.
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