STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Bethany Henry: Family sell home after NHS bosses refuse to pay for medication to help ‘too rare’ sick daughter

Bethany Henry, 9,  is left screaming in agony every night from tumours growing on her liver and needs £30,000 for drugs
A family has been forced to sell their home to pay for treatment to help their daughter fight an aggressive tumour that leaves her screaming in agony every night.

Luke and Stephanie Henry revealed how they have taken the drastic step because medication that would help nine-year-old daughter Bethany is not currently funded by the NHS. The youngster suffers from a condition called tuberous sclerosis which causes tumours on her brain, kidneys and liver and leaves her suffering up to 50 epileptic fits a day. A drug, called everolimus, is licensed to reduce the tumours and stop more from growing but Bethany’s doctor is unable to give it to her as the National Institute for Health and Care Excellence (NICE) will not fund it because her condition is considered too rare.

In a cruel twist, the family is also unable to bid for “exceptional funding” for the drug because the condition is not rare enough as there are more than 30 patients in urgent need of it.

Click on the link to read more

http://www.mirror.co.uk/news/uk-news/bethany-henry-family-sell-home-5676505

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