STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

A mother’s plea to the NHS

With the NHS having suspended its procedure for approving vital treatments, sufferers of rare diseases have been left in limbo. Katy Brown tells her family’s story.

Let me introduce you to Sam. He is our six year old son and for the past two months we have been fighting to keep him smiling. More precisely, we have been fighting for the drug that he had been trialling for almost three years to be funded by the NHS. You see Sam has something called an ultra rare disease. That means that there are less than 500 sufferers in the country. Actually there are just 78 sufferers of Morquio Syndrome in England. Just 78.

How a disease with 20,000 sufferers is funded, researched, prioritised and understood is very, very different to one where there are just 78 people affected. Let me paint you a picture of Morquio. An adult the same size as a three year old. Organs squashed into a very small space. Severe physical disability. Hearing problems, sight problems, heart problems, lung problems. Life expectancy on average of 25. No treatment.

Please click on the link to read more

http://www.yorkshirepost.co.uk/news/features/a-mother-s-plea-to-the-nhs-1-7063396

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19 November 2014……. Sam Brown, 6, with parents Katy and Simon from Otley. Sam has Morquio syndrome. He is being treated with drugs thanks to a trial in Manchester which have significantly improved his condition but cash for this will run out next month and the NHS is unlikely to pick up the tab.TJ100584h Picture by Tony Johnson

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