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

At home: Bethany Henry, 9, with mum and dad Stephanie and Luke and sister Rachael, 5, and brother Brandon, 12

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.
Dad of three Mr Henry, from Brighton, said: "The house has gone up for sale because we don't know what else to do. We bought it 15 years ago.



"As a father you buy a house to provide for your children and protect them. You don't ever expect to have to sell it to pay for medical treatment.

Battle: Despite her illness, Bethany Henry remains a happy and bubbly child

"She was born with this but we didn't have the diagnosis until she was 18 months old.
"She would be having seizures and blood in her nappy and we didn't know what was going on. We had a lot of nights in A&E.
"As a parent it's horrendous to watch your baby suffering and for no one to know what it is.
"Now she hardly sleeps and every single night she's screaming in pain."
Mr Henry revealed that his daughter currently has around 50 seizures a day due to the tumour on her kidney, but despite this she remains a happy and bubbly child.
He also told how his bosses at Tesco have been incredibly helpful - allowing him to work part time as he recovers from his own poor health, but added that every day was a struggle for the family.
He added that Bethany's siblings Brandon, 12, and five year old Rachael, have to cope with less attention from their parents as they adapt to Bethany's needs.
He added: "My wife gave up work when I became ill.
"And it's hard on Brandon and Rachael too.
"They don't get as much attention as they might otherwise because it's so difficult looking after Bethany.
"The youngest doesn't really understand it, but they are aware there are things they can't do because of Bethany.
Bethany's family have set up a fundraising website to help their bid to pay for her treatment.