STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Mum fights NHS to save Little Harvey

Yet another shocking story on how life-saving drugs are not being offered in the NHS. I also posted on 11th May about Bethany Henry, 9 who is left screaming in agony every night from tumours growing on her liver and needs £30,000 for drugs http://www.mirror.co.uk/news/uk-news/bethany-henry-family-sell-home-5676505  Joanna

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A ‘heartbroken’ mum, who will have to watch her little boy slowly deteriorate because of a rare disease, is fighting for a new life-changing drug to be allowed on the NHS.

Harvey Brown is like any other six-year-old boy – when asked what are his favourite things to do, he replies enthusiastically: “play football and eat all the chocolate cake!” But because he has an ultra-rare degenerative disease called Morquio, which affects just 77 children in the UK, Harvey already has to use a wheelchair most of the time just to get around. The inherited illness is caused by an enzyme deficiency, which means Harvey’s skeleton will not develop properly. His organs will continue to grow but his weak bones won’t and he is likely to develop heart disease and breathing difficulties, while losing his vision and hearing. There is no cure for Morquio, and, untreated, patients rarely live beyond their twenties.

A drug which could help Harvey live a longer, happier life is not being offered on the NHS yet, so Vikki and little Harvey took their fight right to the Government’s doorstep in a protest outside Whitehall recently, to demand the “life-changing” drug be made available before it’s too late.

Click on the link to read more

http://www.southwarknews.co.uk/news/mum-fights-nhs-to-save-little-harvey/

Harvey-Brown

Harvey’s ultra-rare condition will only get worse as he gets older

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